#1913 Two Mirrors Part 2
Two Mirrors Part 2
Part two. The advice lands — two mirrors bouncing anxiety back and forth. Hidden apple pouches, a thyroid checklist, a Texas move, and Scott’s blunt fix for a burned-out mom.
Jump to a moment
- The advice part one built to: you’ve got to actually calm down — not perform calm. Scott’s image for it: Amy and Emily are “standing very close to each other like two mirrors, just bouncing anxiety back and forth.”
- “Don’t say the thing. Do the thing.” People don’t learn by being told — they learn from experiences that make their nervous systems comfortable. Kids absorb what parents are, not what they say.
- The hidden apple pouches: Emily treats lows in secret because lows scare her, then lands at 400 with no explanation — and sometimes skips food to avoid another shot. Scott flags it plainly as a pattern worth real therapeutic attention, and the Mobi should remove the extra-shot barrier.
- “In range” is not the same as right: Amy’s TSH is 4.33 with a near-perfect hypothyroid symptom checklist — fatigue, weight gain, cold sensitivity, brain fog, mood changes — and Scott, on tape, sends her to fix it. Emily’s 2.8 is worth watching in a family full of Hashimoto’s.
- Find something you can control that isn’t diabetes (or your husband, or the sweet eight-year-old): a hobby, a run, golf. A rested caregiver with her own life does this job better — and Scott ends by yelling at the recycling department to prove the point.
- Part One — JBP #1911 — Start here — the diagnosis story, the needle phobia, and two sleepless years
- SugarPixel — The bedside CGM display Scott plugs mid-episode — now with characters, including a pirate Scott
- Tandem Mobi — The pump Emily is about to start; sponsor link
Every word of the conversation
Welcome to Part Two0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's podcast is sponsored by US Med. Usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more.
Usmed.com/juicebox or call (888) 721-1514. Today's episode is sponsored by the Tandem Mobi system with Control IQ plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out.
This is part two of a two part episode. Go look at the title. If you don't recognize it, you haven't heard part one yet. It's probably the episode right before this in your podcast player. You gotta calm the fuck down.
Gel Nails and a Blepharoplasty2:11
So Yeah. Yes. Yes. I do. So this is really weird and probably TMI, but I had a blepharoplasty done.
Oh, this is a weird thing.
Wait a while.
Yeah. So I somehow, when my son was, like, 12 old, my the bottom below my eyes blew up, swell swelled like a bee sting with like, a person who has an allergy to a bee would potentially look like, And my eyelids swelled. And it took two, three weeks to go down, so I didn't wear my contact lenses in that time. And then it happened again. And I was like, what the heck is going on?
And I thought, is something during my pregnancy be I've now become allergic to contact lenses. So I went ahead and I got PRK, which is, like, a form of LASIK, but my corneas were too thin to do LASIK, so I had to get PRK. Whatever. So I did this whole surgery to fix my vision so I wouldn't have to wear contacts because I didn't wanna wear glasses because I'm a runner. And so then I moved to London then I was in London.
Sorry. And then I, it happened a third time. And I saw a private dermatologist in London, and she was like, are you wearing gel nail polish? And I was like, yeah. She's like, that's what's doing it.
I was like, are you fucking kidding me? So I have three episodes of the most swollen eyelids one could possibly get, and it was because I had a systemic inflammation from the chemicals in gel nail polish that went through my bloodstream to my eyelids. And if you Google it, it's a thing, apparently. So she's like, the problem for you is that this has happened three times. The skin on your eyelid is so thin, it's never going to stretch to go back now that it's stretched so much.
So I had extra skin on my eyelid that I could feel the weight of it, and people would be like, I don't see it. But I could feel the weight of my eyelids. And so I had an upper blepharoplasty. So they cut the it's like plastic surgery, but, like, I did it because it was so heavy. People do it for, like, looks, but I just had it done, April 30.
So I have the scars still from my, you know, stitches or whatever. And during the procedure so I was not under full anesthesia. I was just sedated. Mhmm. And during the procedure, I hear my low alarm go off, and I'm like, oh, like, so out of it.
I'm like, listen. I need my phone. And the guy's like, no. I don't think that's I'm like, yeah. I need my phone.
So the nurse brings me my phone, and I open it. And she's 55, and she's in school. Right? And I'm like, oh, damn. And this is the words coming out of it.
Oh, it's because I'm sedated. I'm like, oh, she could go into a coma. I should probably do something about this. But meanwhile, my husband's on it. He's in the waiting room.
He's already taking care of it, but I just don't know that because I'm just the primary caregiver.
Not make that assumption, though.
I don't know because I can't shut my brain off.
Oh, Amy, you're out of your mind. That's lovely. Hold on a second. Oh, wait. I don't wanna go I wanna go back to you being crazy.
But but first but first, I wanna understand. I don't wanna get past the gel nail polishing. What did they tell you?
So something in gel nail polish has been leaked to causing, eyelid inflammation.
Specifically? Yes.
Which is so weird, but I don't know how it happens. I don't know. But if you Google this, I have after it happened to me, was like, this is so weird. And those and the dermatologist in London picked up on it within seconds of me coming into her office. But I didn't go to a doctor before that, like a dermatologist, so in America, so, like, nobody knew.
But you're not saying it's not through contact with your with your fingers.
No. No. It's It's from the soaking it in from your nail beds in through your blood stream to your eyelids.
Okay. Well, I'm gonna I'm gonna task something with researching that while you and I are still talking. But I I'm not gonna, actually, it's like I'm not gonna do anything. I just wanna be clear. So Yeah.
Yeah. But I'm gonna see if I can find an answer for that. Yeah. Now wait. Wait.
Now back to you being crazy. So you you weren't before this. You have
Maybe in I don't think so. Like, I don't ever remember being an anxious person. Yeah.
The Guilt6:35
Hey. Listen. I'm not married to you, but I'll assume you were a little crazy before. I think every I think everybody is a little crazy. But but you have interestingly enough, after an hour of talking, you have not mentioned the one thing that you put in your note, which is that you feel guilty.
Oh, yeah. Well, I think, like, you know, this obviously came from my side of her like, the genes. Right? Because my two people in my family have had it. So it's like if you were to go back and be like, listen.
Something bad's gonna you're gonna give your kids something bad. You still wanna have kids? You're like, who would be like, absolutely. You know what I mean? So I just feel like this is my fault.
And at the end of the day, whether she's, you know, 18 and moves to college or 21 and moves away or whatever it is, I get to kinda take a step back from it, and I don't have to worry or deal or you know? At one point, she's gonna be an adult. She's gonna have to worry about waking up from Lowe's and ordering the supplies and, you know, all that stuff, and, like, I'm not going to have to worry about it. And that's like, I just feel bad about that because she doesn't, at 10, get a break ever, you know, if that makes sense, where, you know, she had nine years of, like, healthy
'She Never Gets a Break'7:50
What does that mean she doesn't get a break ever? May contextualize that for me.
She doesn't just ever get to, like, you know, not have anything attached to her body, or if she doesn't, then have to do a finger prick. She doesn't have to think about what she's eating.
Is that bothering her?
Yeah. Yes. Well, like, this is why she doesn't wanna pump first. Like, she you know, a lot of her friends have the Omnipod. She's like, I don't want stuff on me.
So we went to the Moby because we decided on the Moby, which, again, we haven't started it yet, but because we can disconnect it in the shower and the pool so she can get, like, a quote, unquote break, and whatever's left on her is just tiny. She yeah. She doesn't you know, she just like, we'll be in the car, and she's like, oh, I just don't wanna have to do this anymore. And I'm like, I I don't the alternative is not something we're doing. So, you know, we're not gonna let diabetes win today or tomorrow or yesterday.
You're getting the shot. And she won't do shotspot on her own yet. I still do them or the school nurse. But, like, sorry. Like, you you know what I mean?
Like Mhmm. Or she'll be carved for x, and she'll want additional food. She'll be like, I can't eat. I'm so like, I'm so hungry. But, you know, I'll be like, well, let's just give you another shot.
It's fine. No big deal. Like, there's a fix for this. And she'll be like, no. I don't want another shot.
I'm just not gonna eat. And I'm like, Emily, like, this is not like, this is not a big deal. I know it hurts for ten seconds, but, like, let's just if you're hungry, you're hungry. And I get it. At twelve, how are you supposed to know how much you're gonna eat?
What like, you know what I mean? That's a lot to have to think about.
Oh, god. I'm I'm minimizing anything you're saying. I'm just I at all. No. No.
No. No. Yeah. There's no easy way to to do what you're saying.
Yeah. No. No. I just I'm thinking out loud. Like, this is
what was thinking about. I think that's good. Like, because I mean, but she's gonna develop listen. I think there's an argument to be made that, honestly, that everybody living with type one diabetes has some sort of a weird relationship with food. Right?
But, I mean, if she's physically not eating be when she's hungry to avoid an injection, I mean, that's I mean, you're you're looking at an eating disorder at some point.
Yeah. And that's what I try to, like, install on her. Like, Emily, it's just another shot. And this is why I've been like, Adam, just get on the this is gonna be solved because when you're on the pump, you don't even have to get another shot. It's just a few boop boop boop into a little foam, like, you're good to go.
And the move to Texas, I think, has kinda pushed her in that direction because, you know, she's gone to a few birthday parties or friends' houses now where, you know, she again, she won't let she let one mom do one shot one time. And other than that, it's they've had to call and be like, okay. We're eating now. So then I have to go back to that house, give her a shot for the food, leave because no one wants their mom hanging out at 11, 12 years old. Sure.
And then the mom at that house will call me, they'll be like, we're having cake. So then I have to go back and give her a shot for cake. And then, you know, two and a half hours later, it's pickup time. So I'm like you know, most parents can just drop their kid off and, like, whatever and pick them up four hours later. I'm, like, hovering in circles within a, you know, a few minute radius to, like, be on shot call.
You know?
At the 07:11 Yes. Reading reading your phone.
Yes. Yep. And and and I just feel and so I think, like, I've been, like, pushing the pump, but now she's like, okay. I'm moving to Texas. I wanna meet new friends.
I don't want mom hanging out. I don't know who the nurse is. Like, I gotta just have a little bit of that taken off me. And so, you know, as soon as this person from Tandem gets their act together and sends us the rest of our supplies, then we can get the training done and all the things. And we'll, you know, hopefully be in a better spot and hopefully sleep more nights and hopefully Yeah.
Volleyball Lows and Strawberry Lemonade11:28
You know, have less anxiety and hopefully do all this stuff a little bit better and, you know, and and have less highs as well. And, you know, I I don't know. So she plays volleyball and, like, you know, she'll she likes these drinks from Starbucks. It's these strawberry acai lemonades. And we've noticed that she tends to go low during a sporting event.
And so all the proteins, carb snacks, peanut butter, like, we'll try them. Sometimes they work. Sometimes they don't. But if we figured out if she has, like, a half of a grande size of that drink, it'll keep her up enough during the event, and she'll be fine Mhmm. Nine times out of 10.
But then there's that one time where even that doesn't keep her up. And you're just like, what you know, like, it's it's I feel like you do the same thing. She puts in the same exerts the same amount of energy. She's eating the same thing prior to that lemonade. She's you know, it's the same time of day.
It's the same but, like, two totally different results. And that's just one example of Well the things I've seen. You know?
Yeah. I hear you. And I I obviously, that's the thing people say all the time. Like, I did the same thing today as I did yesterday, but I think it's possible that if you had a third party there looking, they might see something that you're not seeing. Yeah.
You know? Because it it could very well be I mean, it could be hormonal. Right? She's old enough for that.
Yeah. For sure.
She's get I I I hate to ask you, but she gets a period?
No. Not yet. But
she's Okay. Well, that could be on its way. Yeah. And it could be activity. It could be I mean, you could be I mean, time of day a little bit, like, based on because you're shooting basal insulin.
Right?
I can.
Yeah. So, like, you could say, oh my god. It's it's volleyball, for example. But volleyball at 8AM on a day where you shoot basil at 7AM might be different than volleyball at 5PM when you shot the basil at 8AM.
Yeah. And then
that would be, like, a small difference that you would you wouldn't see when you were saying, like, I just I keep doing the same thing over and over. I I I I I wouldn't guarantee you, but I would strongly be willing to bet a couple of dollars that that there's something different that you're not seeing. And and and these things are impactful. And it could be around exercise, it could be around hormones, it could be around sleep, it could be around hydration, like but something's different that you're not seeing.
Well the yeah. And the other thing is she's a little bit deceitful too.
You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself a 100%. So one time, I didn't respond to the email.
And the phone rings at the house. It's like, ring. You know how it works. And I picked it up. I was like, hello?
And it was just the recording. It was like, US Med. Doesn't actually sound like that, but you know what I'm saying. It said, hey. You're I don't remember exactly what it says.
But it's basically like, hey. Your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that.
That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com/juicebox or call (888) 721-1514. Get your free benefits checked now and get started with USmed.
Dexcom, Omnipod, Tandem, Freestyle, they've got all your favorites. Even that new islet pump. Check them out now at usmed.com/juicebox or by calling (888) 721-1514. There are links in the show notes of your podcast player and links at juiceboxpodcast.com to US Med and to all of the sponsors. Let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care.
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Hidden Apple Pouches16:26
Like, like, I I when she was first diagnosed, I get it. She was used to being high all the time before we knew. So, like, a 90 felt kinda like, whoo. This is ugh. I don't feel great.
And then, you know, we've slowly kind of been, like,
a seem
to coming down and down and down. But she still gets nervous depending on where she's at and what she's doing of the numbers. And so I have gotten really good at being, like, take you know, we don't need 15 grams of carbs. That's an over overdone. Let's have eight.
Let's wait ten, fifteen minutes. Let's see what that's gonna do. Mhmm. We'll double check with a finger prick, and then we'll have something else if we need to. This is no big deal.
But before I can even get to that point, she's ate in, like, an apple pouch and stuffed the empty thing behind something in the pantry, which I find, like, for months later.
And so there's an impact now, you're just you're not you're unaware of what it is.
Yeah. And then she's four hundred, and I'm like, how did eight grip you know what I mean? And it's like, oh, no. She had that apple patch that she snug that she didn't tell me.
Or I'll find my She had your eight grams plus the twenty three in the thing. Right. Right.
Yes. Yeah. And I'm like, Emily, like, we have to work together on this because if we don't, like, this isn't good. This we need you know? But she's she's not doing it to be a brat.
She's doing it because she's afraid of Sure.
No. Yeah.
Yeah. I imagine. So afraid.
Yeah. But why wouldn't she tell you, though?
Because I think she she wants it to come up really fast. Like, she's comfortable at, like, a 200. Like, she's like, I'm good. Like, this is fine. I'm not low.
I'm not gonna die. I can coast. But I think, like, I think for me, I'm like, let's try to get you at, a 1 or a 100, a 110, 100 or a 110.
Yeah.
You know? And I think for her, she's
Three Therapists Later18:10
like Is she seeing a therapist?
Well, so so funny enough, when we moved home, we saw one. She hated her. And to be honest, the lady was kinda condescending, and I didn't like her either. And then we saw two others, including needle exposure therapy guy, who I thought was great, by the way. And he was super chill, and he had all the right techniques with toys and different stuff, whatever.
And then we saw a therapist that the hospital Rainbow Babies here in Cleveland gave us. So she was, like, in the endocrine world directly. I was like, she'll know all the things. And she just has she comes across as rude. And my husband and I have gotten on her because we're like, listen.
If you go in there and you don't wanna talk, like and you just want me to do primary talking until you get to a point where they know a little bit about you and you're comfortable with them, and then I can step out of the room and you can but, like, she she likes the eyes she gives these people, I wanna be like, she's really not that rude. She's just mean to you because and, like, the doctor, like, the doctor will ask her questions, and she, like, doesn't look at her. I'm like, Emily, this lady saved your life. Like, you you know, that's her job and fine, but, like, at the same time, she didn't give this to you. She's helping us survive this.
You gotta be kind to this lady. But it's like anybody She's having a lot of anything.
She's having a lot of trouble with this.
Yeah. Yeah. Yeah. Yep. Yeah.
So it's just it's honestly, it's like a day to day thing, and that's the other thing too. Like, you know, she'll if my husband's up on, like, a Friday night watching, like, the basketball game or whatever, and I'm like, I'm tired. I'm going to bed. And she wakes up from something, he'll be like, I got this. Like, we're fine.
And she'll run past and wake me up. And he's like, I have told you to let your mother sleep. Like, she does not get enough sleep. This is her night to sleep. Let it go.
I've got this. And she just until I'm awake and I'm aware of what is happening
Mhmm.
She is not and I have a sugar pickle pixel next to my bed. So if she's, you know, 85, that thing's waking me up regardless. So I'm not worried about missing something, but she is worried so so much that I will miss something.
Can I can I pimp for a second? Did you see the sugar the sugar pixel update, the new one with the big screen? Oh, wait. You should go to customtype1.com/juicebox and take a look. Okay.
But I am I've he added, like, all these characters and everything to it for younger kids, and and I'm one of the characters. I just wanna say that.
Carl, look away. That's amazing. Yeah.
Yeah. He he really set up this really lovely it's really something. Anyway, people should check out the new SugarPixel. Pretty cool. Yes.
I think I make a couple if you use my link, I make a couple of bucks when you buy one. And that's not why I told you about it. I told you about it because, like, I'm I told you about it because I'm, like, a little there's a pirate character that has a chameleon living on it, and that's me.
Okay. Yeah. I love it. Yeah.
It's pretty
I love it.
That's so funny. Jumping in. I I I don't know if I I should say the owner's name, but he's really a a really lovely person. But okay. Back to your daughter.
Would she talk to somebody else who's not you about it and not a doctor? Would she, listen, would she come on the podcast and talk about having diabetes, or is that a thing that you think would mortify her?
Grandma, Babysitters, and Trust21:21
You know, it's a good question. I don't know. So last summer well, so I right after she was diagnosed, my mom came. Right? So my mom, diabetic herself, type one, ICU nurse for her entire career that she worked.
So I was like, perfect. Like, I've got a babysitter. I've got backup. She lives in Maine, so she's not always available, but whatever. She came out to help, and it was awful.
I love my mom. So, mom, if you ever listen to this, I love you. But she bruised Emily so bad. And I'm like, how have you been an ICU nurse this long? Like, I don't know if you're just like, I don't know.
But she's been on a Omnipod, so she hasn't had to worry about, like, actual injections all the time, you know, frequently for herself. But, know, like, she would be preparing food, and there was a thing where I was like, mom, I gave Emily a shot like, a fourth a cup of strawberries. Like, this was in the very, very beginning, like, a month after we were diagnosed. And I I leave the room, I come back in, and Emily has probably, like, a cup's worth of strawberries on her plate. And I'm mom, did you hear a fourth of a cup?
Because I'm not or she would throw things in the rubbish, like, can or the packaging on, like, a tortilla wrap, and I'd be like, I need to know what the carbs are. Oh, I threw that in the rubbish. Well, how do you know what you're dosing for? You're a diabetic also. She's like, ah, you know?
And you're just like, oh, but find your things dinging all the time.
How's your mom's health? How's your mom's health?
It's dinging all the time. It's dinging all the time. She has you know, honestly, for what she bless her heart. She took care of us. She put herself on the back burner for for her entire life, like, when she was 42 or 40, I think, when my dad died.
And she just worked, you know, twelve hour shifts. She walked to work sometimes so we could have a car to drive when my older sister had got her license. Like, she sacrificed everything for her children. So I think she put her health on the back burner. For what she's done and how she is today, she's 75, and she's really not terrible.
Like, she has no high blood pressure. She doesn't have high cholesterol. Like, all the typical things you see people getting around their seventies, like, she doesn't have them. She has the Hashimoto's. She has the type one, and she does have eye issues where she has to get an injection in her retina every four weeks, I think.
And she claims it's not from diabetes. I think she claims diabetes exacerbated her condition, but it's something different. I don't know if she's telling me the truth because she's just trying not to scare me for Emily. And I do know somebody else who has the same thing, and they don't have diabetes. So I'm just like, I don't know who to believe.
But I overall, for what you would think she would be, she's actually not
terrible.
She's yes. Yeah.
Yeah. I mean, gosh. I so I don't so so you were kinda hopeful that your daughter would talk to your mom, but that didn't go as well.
No. And no. No. And she won't even sleep over at her house. And that was, like, an annual summer thing.
We'd go to Maine, and Emily would get, like, a private sleepover with grandma, they'd go out to dinner, and they'd get a toy, and they'd go and now she's like, I'm not going there.
No. Because because of the bruise from the needle?
Because of, yeah, she's just scared that grandma won't wake up from a furlough or, you know, she'd get bruised or she won't know what she's doing or how to count. The only person she's let babysit her for we'll have a local babysitter, but I'll only go away for three hours. So I'll give Emily a shot. She'll have dinner as I'm walking out the door, and I'll come back by nine to give her her next shot for bedtime. The only person that she's allowed to babysit her longer than three hours is my sister who is an RN forever.
You know, the over the top, like, ove you know, checks everything. She is my best friend. She is everything to me. We are pretty much twins separated by nine years. And that's the only person who Emily has let babysit her for an extended period of time when Adam and I went to my husband and I went to a concert last summer, like, forty five minutes away.
And it
was actually the it was Jack White. But it was the first time in this diagnosis that I was away, and I didn't look at my phone. I'd looked at it, like, once or twice, but it was
like Well, what changed? How come you didn't look? Were you high?
Because my no. Because my sister was watching her, and I have all the faith in my and, yeah, all the faith in my like, I love her. She is my best friend. Like, we are yeah. I couldn't do life without her.
You a question, Is there some reason why your sister's a better choice, or is it just a person you're comfortable with?
I think it's a person that oh, I think because she's an RN, she knows what she's doing, she's not relaxed. Like, she wouldn't be relaxed about Emily's care my daughter's care because she knows like, you know, like, she would she's just if anything happened on her watch, like, she would not forgive herself. So she's very on top of it. She is a great RN, and my and my daughter knows how much I love my sister. And, like, we do girls trips and stuff like that, like her me and my sister.
So, like, I think Emily realizes how much I trust my sister even before the diabetes, just in life. And so that was like, oh, I no, auntie.
Two Mirrors — Where the Anxiety Bounces26:40
So, Amy, are you telling me that your attitude and what you say is transferable to your daughter about her care?
I don't so I've never said anything about Kristen being a good caregiver for diabetes.
That's the vibe that she gets from you?
I just think because she sees how close I am with Kristen, yes, that my sister that yeah.
My question would be, isn't it possible that some of the anxiety is a vibe she's getting from you too that you're not aware of?
I don't maybe. But, like, me and my husband are getting along great. Like, we we don't fight. Like, we're not, you know
No. I don't mean that. I mean, you I mean, listen. I I think the the the the value of this recording for other people will be one thing. Yeah.
But for you, it's gonna be a completely different thing. Because when you listen back to this, if you don't listen to this and think I sound a little unhinged, I'm gonna be surprised. Okay? And and if and if you don't thank you. And if you don't listen back to this five years from now and go, holy hell.
Is that how I was? I'm gonna be surprised.
Like It's gonna be a good time capsule.
That No. I really think so. Like, I think it could be really valuable for you. And and I don't I just don't don't disregard the idea that you might be giving off weird energy that you're not aware of and that she's not reflecting it, and that you guys might not be standing like two mirrors just reflecting it back at each other.
Yeah. I do agree. I'm exhausted. So I I think you have
this in it. In your speech pattern.
Yeah. Yes. Yeah. Yeah. And, like, I think, like, that comes like, I get I get, like, I have no patience.
And, like, a lot of people are like, oh, I hate everybody in my forties, perimenopausal, but and I'm just exhausted. So I'm, like, I'm annoyed at everything and every you know, I mean?
Have time to hate anybody.
I'm too tired. Yes. I do. But I think, like and and she has a little bit of the teenage tood coming on too, so it's like a double whammy. You know?
And I think, like, there will be some times where I'm just like, oh, this is like just you know, I just told you to wait fifteen minutes or eat your protein first or whatever.
That that's gonna start happening.
Yeah. Like, I don't know. Like yeah. So I just I
have to tell you. I don't know if it's right or wrong or if I should use it. I wanna I wanna talk to your daughter so badly. I could taste it. Yeah.
Yeah. Like, don't don't force her, obviously.
But No. Will.
Say, if you like tell her she can complain about it or whatever she wants, she can I also, I love the way you curse? Will she curse like this too?
No. So I always say I'm from Massachusetts. Like, that's part of who we are. I don't know if that's a thing or not, but
I Such an interesting mix of the time you moved out. You referred to the trash as rubbish, so that comes from That's New England thing, though. Wait.
That's a New England. My grandma UK? It is, but I think it came over to New England a bit too because my grandmother and my mother, we grew up calling it rubbish. And a lot of people call me out on that. I'm like, no.
No. That is a New England thing.
Think it's a wrong word. I just think it's and and there's and there's times where you have, like, some southern stuff from the South Carolina going on, but your your language is definitely from Boston. Like, it's all really you're a really interesting mix.
So I'm mutt. You've said
fuck more times in this episode than I've said in the last month of making the podcast. Like like, so much so that at the end of this, I'm gonna have to leave a note for the editor and go, hey. Like, listen. She even said it under her breath one time. By the way, like, thirteen minutes into it, you said it under your breath.
And and so anyway but I don't care. I just think I I think it's for the anyway, I'm gonna tell you that you're early on in this. Yeah. I understand all of your concerns. If you can find a way to believe me, they're not really things you have to worry about mostly.
Okay.
I'm not telling you not to pay attention and just throw it off to God. I'm not saying that either. There are definitely things you have to pay attention to. And but I just think you're you're just too deep in it right now. Like, you sound you sound so far up your own ass, I don't know another way to put it.
Like, you Yeah.
No. You're not wrong.
Oh, I know. I'm I've been doing this a long time. I'm good at this.
I wanna Yeah. I wanna I wanna go to a comedy show with my sister in December in Rhode Island, Providence, and Emily heard me talking to her. She's like, you can't go. Like, Emily, it's eleven months from now. She's like, no.
You can't go. I'm like, well, I'm gonna go, and that's gonna be a different we'll have a conversation about that at a different time, but, like, you will live.
But you the conversations aren't gonna fix it. Like, you have to meaningfully do something without talking that alleviates her anxiety about it. Yeah. Yeah. The you can explain shit to people all you want from here to eternity.
If that worked, then Jerry Springer would have only had to run one episode where a 13 year old was pregnant and the rest of the world would have went. That's not a good idea, and then it wouldn't happen again. Okay? But that's not people don't people don't learn by being told. People learn by having experiences that make their nervous system comfortable.
Yeah. Yeah. That's true.
So yeah. And you might not be the best arbiter of it. And even like like and and that's gonna be tough because you've also tried three therapists. You've only liked one of them.
No. No. I like two. I didn't like one. That so yeah.
The other way, but it's fair. And now
and now you're gonna move to Texas. Yeah. Right? So the so things are gonna change. She's gonna get a new school.
You run the real possibility of her hiding her diabetes, like, deciding, like, oh, change of, like, venue. I'll just pretend this isn't happening to me. And then you guys are just gonna get into fights about it. And and it's gonna get worse, and she's gonna eat more food and hide it, you're gonna you're gonna be I I don't listen. I I like you.
I I I don't think but you're you're you're aggressively unapologetic when you're talking about stuff.
Well, it's so funny because I just listened to your podcast with that lady who moved to Finland for six months, and she was like, but we don't because kids need stability. And then I was like, oh, we've moved our kids so many times. Like, that lady would hate me.
I'm sure she wouldn't hate you. And and and I think there's ways to to find stability in in this too. Like but, again, like, you are I I know nothing. I wanna be clear. I barely graduated from high school.
I did not go to college. I hold no degrees. For the lady on Reddit that likes to say all the time that I think I'm a therapist, I don't. But but but what I'm gonna tell that. What I'm gonna tell you I just assume it's a lady, by the way.
Lead by Example — Don't Say the Thing, Do the Thing32:53
And, and it might not be. It could just be a very sensitive guy. I have no idea. But but but what I'm gonna tell you is that is that you gotta lead by example. Yeah.
That's how kids learn. That's where they get their confidence from. When you panic, they panic. When you think you're not showing your panic, you're out of your mind. My we we just my kids are 26 and almost 22.
We and you haven't had this yet because your kids aren't old enough, but we older parents wouldn't know about this. We had a lovely couple of hours conversations where our kids broke down everything we do wrong recently. Mhmm. It's a nice thing you gotta let them do as they grow up when they think they're understanding the world, and they and they think they're smarter than you now, and they they sometimes they wanna let you know. And I went through the same thing as a as a you know, when I was young too.
And we very, like, happily stand and have conversations and let them explain how we've everything we've done wrong. And and, you know, and we try to absorb it because they might have points, and there might be situations where they where they they're misunderstanding because they don't have enough life experience. But my point is is that the only thing that really comes from that conversation is they feel heard, and they believe we're listening. And that teaches them lessons outside of the conversation. Our parents will listen to us when we're talking.
They'll let us be critical. They'll push back when they don't agree. Those are the lessons from that conversation, like, the life lessons. The the the words from the conversation are not what's gonna be remembered. And and, like, I try to make that, example more simply when I said, like, I think that one of the greatest things about being a stay at home parent was that when my parents when my kids opened the door after school, they knew I'd be there.
Yeah. That builds that builds stability. It builds trust. It builds calm. And and my point is is that all the things that you think you're hiding, you're not hiding from your kids.
Like, so your anxiety I I really do think that the best analogy for your conversation right now is that you and your daughter are standing very close to each other like two mirrors just bouncing your anxiety back and forth with each other. That's how it seems to me. And I don't know how to fix that other than to say, you've gotta calm the fuck down. And then
the steps.
And then and not just pretend to be calm, but actually be calm so that she can absorb that, and that's what you can start balancing between each other. Yeah. Yeah. Don't say the thing. Do the thing.
Right. Right. Yeah. No. I do and I do think there's been a slight increase in my, you know, less having less anxiety since diagnosis.
But and I'm hoping you know, and I'll go back and forth, and I'll be like, in three years or five years, maybe I'm a diabetes educator. Maybe that's what I'm gonna take away from this. Maybe I'll be a
You stop. Like, really, your husband's gonna leave you for sure. I just wanna say that. And no. No.
Seriously.
Is that why he travels to place for work?
I have to go to Brazil.
Yeah. He
may you should have googled that. I don't think his company's probably even in Brazil.
He's watching.
Yeah. Up the street to the best western. Yes. Like, just sitting there.
Oh, man.
So so, like
wouldn't blame him.
No. But but seriously, like, he's not gonna say this to you because he would like to continue to see your boobs. But, like, I'm telling I don't care about that, so I'm able to tell you, you really gotta calm down. Yeah. Like, I don't know how to do that.
Like, I know that's not functionally helpful, but you have to figure out what that means. Yeah. Yeah. That's my best advice. And I am a podcaster, so you should probably listen to me.
I I also wanna tell you that I was not able to, nor was ChatGPT or Google Gemini, verify what you said about the the gel nails. That that is not a yeah. There's no there's no nothing I can find that says that. Here's what it It's
so funny.
Extremely common due to hand to face transfer. That can happen.
K.
Confirmed by patch testing, that it could be an allergic reaction, but the idea that it's drawn through the blood through the nail bed, I could not find any backing for it all.
Really? Oh, that's funny. So I'll have to look that up again. And if I find it, I'll send it to you.
Yeah. I love that. Or just keep in mind that, like, it could be a colloquial thing that the doctor said to you. Like It could be.
It could be. And and All I remember is her saying, this is never gonna go back. You were doomed for life. And I was like, okay. I just gotta get an upper blepharoplasty.
I'll be fixed.
And, also, I'm not judging you because I I came very close to having the sunspots lasered off my cheekbones. Talking about bougie. And, like, I I and the the the the cost scared me, but it wasn't but I could've I could've found a world where I would've gotten over the cost, except they were like, it's gonna come back in a year. And I'm like, well, then what's the point?
That's not worth it.
Yeah. No. Yeah. What's the point? Because it's a thing I'm anxious anxious.
I I see it when I when I see myself. I see it. Yeah. And I do some I do a few things on video. Like, they usually put makeup on me, so it's not an issue.
But, like, I I I worry about it. And so I did go to ask about it, and I probably would have shook the money free for it if it would have been a a forever fix, but the the lady was like, it's gonna be back in a year. And I'm like, well, then I don't yeah. I was born in the seventies. I don't that sounds like bullshit to me.
Yeah. I was like, you're either fixing it or you're not. Like but we Right. Yeah. We're not patching.
I'm not throwing spackle on this thing and, like, you know, waiting for it to crack and fall apart again.
That's so funny.
'You Need a Hobby'38:37
Alright. So have I been at all helpful to you? Have you had a good time? Is there anything you wanna say?
Yes. No. Great time. You know, I just hope that maybe as I get become more of a seasoned veteran at this whole thing, I'll be a little bit able to roll with the punches a little bit more and, know
fully alright. You listen. And that that's the hidden secret of all this is that eventually everybody gets there.
Yeah.
You just gotta get out of your own way so you can get there faster.
Yeah. A 100%. I think then there's the whole other thing and talking about being worried is, like, my eight year old. Like, is he gonna get it? You know?
And I don't wanna do the testing because I don't wanna know what I don't wanna know. You know what I mean? But it's like and I've had two different opinions from endocrinologists, from my endocrinologist who she has spoken to different endocrinologists, and they've been like, one has gotten their other kid tested because they wanted to know, and one was like, well, if it happens, it happens, and I don't care to have that in the back of my head. So I'm like
I've heard both arguments.
Fifty fifty thing.
I understand. I've heard both arguments. I I agree with both arguments. Like, they're you know, it's that's a personal thing. But, like, you need a hobby worse than anyone I've ever met in my life.
Like, is there a thing in your life you don't do anymore that you miss?
Oh my god. You're so funny. I just I love, well, I don't know. I mean, I always say, like, I think it's a weird time of life too because a lot of my friends here in Ohio are just people I've met since we've moved here. So, like, my my close close friends do not live here.
They live in England, live Massachusetts, whatever. But, like, the people I know, I'll be like, let's go play pickleball just for fun. And, you know, it'll be like, yeah. Let's do it Wednesday. And then someone gets sick.
A kid has whatever. You know, there's always just something with life that comes up. I used to, like, horseback ride growing up, and I loved it. And I'll go back into it here and there. But, yeah, I don't know.
Like, I always just feel like
I feel like you need a thing to do worse than anybody I've met recently. Seriously. Yeah. Yeah. Yeah.
I I think pick something that's not gonna get like, that that you can do by yourself or that maybe you and your daughter could do together that that you could that wouldn't you know, maybe it's a thing, like, that you I you know, like, go to a movie. Like I
wanna take up golfing. I think golfing would be fun.
Go learn there. Go you are the whitest lady I've talked to in a while. I just wanna say. It's absolutely fantastic.
I feel awful about that, though.
You're translucent. I imagine I could see through your skin you're so white.
Which I do? And it's it's a combo between red and white depending on the sun shining.
I like horseback riding. I might wanna golf. You
make me sound terrible. I'm
so sorry to
make people
listening to this subject. Don't sound terrible. You sound like you. There's nothing wrong with you. You're awesome.
But it's just I'm just making fun and and joking. Also, I I'm very I say a lot of very Caucasian things. Don't worry. It's, you know? No.
Like like like, listen. We didn't get to it, but I called the township today to complain about my recycling pickup. Yeah. You know? As I was doing it, I was like, this is terrible.
Oh, man. Not a thing I don't think my dad would spend any time on. You know what I mean? No. But but but, seriously, like, something something that's that that takes you out of it for a minute.
Oh, man.
You know what
I mean? Too funny.
Yes.
Now I'm now I'm gonna go around thinking all day. I'm too white, Scott. Thank you.
No. There's no there's no
such No. There's no such thing.
Like, you just funny. No. No. I but, seriously, like, one of those things, like, go do one of those things.
Yeah. Yeah. But because Yeah.
You need to not think about this for a little while. And I don't mean, like, planned, like, planned not thinking about it. Like, I mean, your life has to be such that there are times where you just don't think about it, or you're thinking about something else and it's and it's occupying some of your time.
Yeah. Yeah. I do think though, like, if I if this was me, I probably would be like, whatever. Like, this is but because it's my kid who I'm supposed to be able to protect, like, there's a part of me that's like, shit. You know?
Like,
I'm gonna guess if it was you, you would turn this type a personality on that.
Probably.
Yeah. Which, by the way, I'm I'm beginning to think that type a just means anxious. So, like, and and not for you, I mean, in general. Like, the more people I talk like, time wise, we like, used to call people, like, type a, and now I realize those were anxious people. And and so but, yeah, you you would probably do that thing where you, like, you you controlled it, and that would give you some sort of feeling of calm.
And and it feels to me like you don't have control over this, and it's so out of control. Like, there's just so much about it that you can't know. I think that's what your language means when you say I do the same thing over and over again. Think I what you're actually telling me is, like, I feel like I don't know how to wrangle this, and and that's making me feel uneasy.
Yeah.
Yeah. And so, like, find something you can control. Not and don't make it your husband. He really will leave. Like, pick like, and don't put and don't put it on that little boy, by the way.
Like, you have to go find something he's so sweet. You have to go find something else that you're good at, that goes the way you expect it to, that takes up a little bit of your time.
Well, I mean, you know, it's funny because you wouldn't think somebody who's this anxious and this type a to move as much as to be so free to be like, yeah. Let's just let's move country, like, whatever, or state, or the other you know, like, and all that stuff. It's like but then this is so different. Like, it's so bizarre to me that I could be two separate personalities in one person.
Well, it might be something about it that, like you know, like, almost like two tuning forks. If you hold them together, they stop. So, like, you know, like, maybe maybe there's something about the excitement and the unknown part of, and there's something to do. Right? So here Yeah.
You so you've moved a lot. So there's a lot to do when you move, but you know you can get through it and get it all done. So the it probably moving probably just seems like a lot of tasks that you know you're going to win at.
Sure. That's true. Right. Yeah.
Yeah. Because it's a it's a it might be your hobby. It's a thing that you know how to do. You know how to do it well. You're going to get it accomplished.
At the end, you get a prize. You get a new house. So you get oh, you're like you know what mean? Like, that whole thing. It's probably just the thing you're comfortable doing.
Yeah. Yeah. Yeah.
And and so you yeah. So it probably bring listen. I and, again, I I hear you. I'm not a therapist. Write it.
I I I I I'm just this is how it sounds when I'm talking. I could be a 100% wrong, by the way.
Like Who cares? It doesn't matter. It's shitty. Better.
Yeah. Yes. A Star Wars song about that. If it makes you happy, it can't be that bad. So I was gonna call this episode yard house, but but now I don't know.
Now I might call it something else. Feel like in the in the last twenty minutes here, I feel like we actually hooked into, like, what what the the thing like, it took me a while. Like, I think you're delightful, so, like, I got lost in the conversation a little bit. But but, like, you seriously, like, I I think it's there's something about the I just think you guys are just reflecting it. I I think you're just in that mirror situation I was talking about.
If you can figure your way through that, I think you get it. But if not, I'm sure you'll be fine. You just you just live anxiously your whole life. And I haven't asked about medicating yet because I don't I mean, I'm I assume there's ways that you could probably work your way through it, but, I mean, maybe? No
idea. Yeah. I don't know. I mean, I've not even taken, like, a Tylenol my entire life. Like, I hate medicine.
And and it's funny because I was listening to your episode about your daughter taking the levothyroxine or whatever every day, and, like, there I am pretty good about it, but there'll be days, like, I'll be like, oh, shoot. Like, maybe once every three months, I'll be like, did I take that? You know, but it's normally a thing.
Thyroid Time — Check the TSH46:39
That's hey. Did your daughter
I'm not yeah.
Did your daughter get checked for Hashimoto's?
So she did. She's fine on her TSH and her celiac panel that is typically high, I guess, when your first diagnosis is coming down nicely. So she seems to be everything seems to be checking out as far as, you know, all the other potential
What what's your TSH?
What's hers or what's mine? Hers. I am not sure. I could pull it up on the
Do you know yours while you're looking?
I can my chart. EMH. Hold on. See what if I can log in really quickly here. It's so funny because I was actually gonna have this number ready to go because I thought we would talk about it, and then I didn't do it.
My last TSH was TSH was 4Point33, which is actually higher than it normally is. Wait.
Yours was? Yeah. Oh, sweetie. That's way too high.
You think so?
Yeah. Yeah. Yeah. Yeah. We want that under 2.1 at least.
The other one, the one before that was three point nine four.
No. No. You're not taking enough.
So I need I'll just double up on my pills.
You call your doctor. They'll do the math and tell you what to do. And if they don't know how to do the math, you have the wrong doctor for your thyroid. Okay. What was your daughter's?
I'm gonna go back to her now. Hold on one sec. Oh, that's funny. I honestly, like, didn't even like, you know, my stuff now, just like, yeah. It's fine.
It's not, though, but some of your anxiety could be from that.
Yeah. That's true. That's true. Okay. Hers was in what date was this?
January of this year. Mhmm. It was two point eight.
No. No. No. No. Okay.
Alright. Now we're getting to it. Oh, Rob, two parter. Okay. Alright.
The Symptom Checklist48:48
Ready? First, Fatigue? Okay. Yes or no?
Yes. Oh, but I mean, but I don't sleep. So that's
something. Don't do that.
Okay.
Are you fatigued? Yeah. Okay. Have you gained weight unexplained?
I'm huge. I used to be one twenty, and I'm now one thirty eight. And every day, I'm like, those cage
genes are convenient. That people who are body positive are not gonna let you say you're huge at one thirty eight.
Okay? For me. For me. So that's fair. But, like, when you know when you put on your favorite jeans and they don't they don't cut in anymore.
You've gained weight.
You've gained weight. I have gained weight.
Yeah. Sensitivity to cold.
Oh, oh god.
Yes or no, please?
Just check all the yes boxes.
Are straight up what? Constipation or decreased bowel frequency?
I would say I would say, like, I wouldn't say constipation, but may potential digestive issues.
At least once a day?
Yes.
Yes. Skin and hair changes, dry skin, brittle nails, hair loss, or thinning? Yeah. Poggin of issues like brain fog? We're gonna say yes.
Muscle and joint pain, aches, stiffness, or weakness? Oh, well None. Oh, god bless you. We're nine deep in the list, you found one you don't have. Mood changes, feelings of sadness, or depression?
Yep. Depression. Not depression. That
yep. Was but that yep was awesome. In
my defense, it's not depression, but it is mood changes. Like, I'll be like, I'm just so tired of everybody. You know? And I freak out, and everyone's like, mommy needs to go to bed. And I'm like, yes.
I do.
Okay. Okay. Okay. Hold on a second. Yep.
Now your daughter.
Mhmm.
Fatigue? No. Weight gain? Nope. Sensitivity to cold?
No. Okay. Does she have digestive issues? No. Skin or hair changes?
No. No. I don't think so. Not that I've seen or she's complained about. Definitely not hair change, and her skin seems great.
Brain fog?
No. She's a straight a plus student.
Okay. Mood, joint pain, achiness, stiffness, weakness?
I wouldn't say stiffness or weakness. She does seem to be, like, injury prone, but I kinda, like, tease her because I'm like, Emily, like, this is not well, how are you getting hurt, like, stubbing your toe? You know, that kind of thing, but not but it I don't know if it's just for, like, picking up on things to complain about. But I wouldn't say no. I would say no.
Mood mood changes?
How do you differentiate between
a normal mid teens from a girl? I've only had a daughter for twenty one years, and I've only been married to a woman for thirty years. I haven't I don't have any of this figured out yet, just so you know. And anyone who's Undeterred. Anyone who's insulted by that, stop it.
So okay. So symptoms of hypothyroidism so the anxiety adrenaline cycle, if the thyroid is in a phase of releasing excess hormone, your body is essentially in a state of chemical overstimulation. This mimics the physical sensation of anxiety, racing heart, shakiness. Your brain then attempts to find a reason for these physical sensations, which can manifest as psychological anxiety or hypervigilance, blah blah blah. Point is is that there's stuff about thyroid issues that can kind of make anxiety worse.
Yeah. Okay? Yeah. And so Yeah. I would tell you this, that your mom and you have Hashimoto's and her TSH is in the threes already.
It's it's here if it's not coming.
Yeah. Okay. For sure.
And and so it it's great that she didn't have any symptoms, but don't let those things pop up and you go and make excuses for them. Like Sure. Because she's I would absolutely bet my my little pinky on my right hand that she's gonna have Hashimoto's at some point if she doesn't have it now. Right?
Are you left handed?
No. That's why I said my right hand because I was trying I was trying to project actual confidence in my statement. Okay. So, I mean, I might get her scanned now, like, let them do the scan because an undersized thyroid is is probably Hashimoto's or if she's got little the the nodules. Right?
Yeah. And so but you you should know better that your your TSH is way too high. It might just because of the weight gain that it is. I don't know. It might just be that you need more medication and you haven't adjusted it lately.
But what do you want? Point seven five?
No. No. I think, I could be wrong, but it might maybe it is point seven five. It's either point seven five. I've never been higher than 1.25, and that was, like, peak pregnancy.
So maybe it is back down to one point
I I would get your I would get your TSH under 2.1. I'd get it as low as you can get it without being hyper. But, like, I would I would def in the fours. My goodness. Most of these issues are gonna probably go away for you when you get it down.
Honestly, like, it's so weird because I get this, like,
The Recycling Rant54:13
I can't be in charge of all of you. Okay? Like like, I need some of you to do something once in while. I had to explain dumping a trash can to a person who works in the recycling office today. And I I can't I need I wanna go listen.
I wanna go out in the world, and I wanna see someone with some level of confidence do their fucking job. Okay? Like like, seriously, I can't I I I I I can't. Okay? I I I I just I need you cannot have nine things wrong with you.
Know you have Hashimoto's and not do anything about it. All of you. I'm talking to all of you, not just Amy. Well,
the thing is in the green, Scott. So I thought it was okay.
The green you're a you know who's bad at being
I know.
You nurses are a problem. I'm just gonna tell you right now. I've I've talked to enough of you. Uh-huh. Yeah.
Siri seriously, I'll say it again, but people have to be sick of it by now. Your lab results in range doesn't mean anything.
I know. I know.
But you know
I don't. I know. But I kinda do, like, the bare minimum. I go to the doctor once a year. They do the thing and whatever.
I walk away. None of this stuff was happening to you anymore.
Oh. Why is that love it.
Since we're into a two hour episode, Amy, explain to me before we go, explain to me why that's a laughable idea. Like, this
I just I'm just so, like I feel like I'm two different people, Scott. Like, I have this massive anxiety about stuff, but at the same time, I I just love to, you know, have a good time and relax.
But what a weird no. Hold on. I'm I'm cutting you off now. What a weird statement. Right?
Like, I have massive anxiety about things, And I say to you, hey. You have fatigue, weight gain, sensitivity to cold digestive issues, skin and hair changes, cognitive issues, muscles and joint pains, and mood changes, and I didn't ask you about your heavy periods. Do you have heavy periods?
Sometimes. Not all the time.
Decreased labino? I bet your husband would like that one fixed. Now listen. What I'm trying to tell you is is that, like, literally, you would take the same size pill. It would just have a different dose inside of it.
But that's different number. And and why aren't you anxious about that?
I don't know. It's a good question.
Oh, it's a goddamn good question. Like like, no. No. We're not fixing the world's problems today, but, like, that's the thing I want you all to ask each other. Like, why are you putting so much effort into stuff that and and on the it's I don't even know how to put this exactly.
It's like it's like you're trying to walk into an open fire hose. Yeah. And and you're struggling to get through this jet of water that's that's never gonna get through. And and then I pull back and find out you're the one shooting the hose at yourself. Like, just shut the hose off, and then you don't have to fight anymore.
I can't possibly make more sense than this. Oh. Everyone fix themselves and leave me alone. That's what I'm on this I'm sorry. I'm so upset about the recycling still.
No. Why could they not just take the recycling? So
well, it's annoying because then it's in your house for another week, and you don't know.
I made that point to the gentleman. Also, we're two weeks here. So I said, now I'm sitting on this can of recycling for a month. He goes, why a month? I said, well, I've already been holding it for two weeks, and now it's gonna be two more weeks.
No. Do you know what? In England, the rubbish would not come every it would come every two weeks. You only had one can, and they would not take a bag if it was not inside the the can. Right?
So if you had extra stuff, you're, like, shit out of luck that week. And so we would go, and we would walk down the street, and we would find other people's rubbish bins to put our trash. Like, not big bags, but, like, little coffee cups Because it would take up precious square footage with my rubbish can. We didn't wanna do it.
Worst episode of Pattings and Bear ever. And so I would, I just I will say this that this is a thing that's I'm not gonna bore people with this. But in my town, they suddenly decided there was one can they'll pick up and no other cans. So about a year and a half ago, suddenly, they just weren't taking one of my cans. When I called and made the the point to the lady on the phone that, I'm now stuck with this at my house for a month, She said, and I'm quoting, just throw it in the trash.
And it's been in my it's been in my head ever since. And so today, when so, anyway, a few months after that, I was talking to the driver, and the driver goes, I'll take whatever can you put out. So for a year, they've been taking all my cans. Now today, suddenly, they don't take it again. I'm back on the phone.
I hear the lady, and and she's like, you're complaining to the wrong person. I'm like, well, do you not work in the trash and and and the recycling department in my township? And she said, yes. I'm like, well, I don't why are you not the right person? She goes, well, we contract out to another company.
I'm like, well, that's between you and Jesus. That has nothing to do with me. Okay? I'm like, you're telling me she thought she wasn't responsible because they pay someone else to pick up the I'm like, are you out of your mind? So I tried not to get upset, and then I might have.
And I was trying
to explain to her my
taxes and other things. I sounded insane. She didn't even she just put me on the phone with another guy. And, like, she didn't even say hold, please. I just there was another voice on the phone, and I I I laughed.
But but I said to him, I was like, I it it's either important that we recycle or it's not. But if it's not, then I'm gonna stop recycling and throw all my recycling in the trash. And and that's not a thing I wanna do. I wanna do whatever the right thing is here, but you can't tell me just throw it away now. And and and and he goes, we'll come pick it up.
And I went, thank you, but don't use that can again. I said, but I've been using it for a year. He goes, you probably got a different driver now. And I'm like, none of that makes any sense. And I was like and I I I am insulted that I seem like the crazy person now.
I was like I was like I'm like, you are you are you are taxed with picking up my recycling. Just do that, please. I was like and and and and and and don't tell me that the guy you hired to pick up my recycling is at fault, not not you. Like, I pay you to pick it up. I don't care I don't care who you subcontract to.
Like, what are the main conversation? Then I came in and complained to my wife for ten minutes. And then and she stared at me like, Scott, what do you want from me? And I was like, I I I I just want somebody to pick up the garbage. And so, anyway alright.
Wrapping Up1:00:31
Listen. I I I I wish you a ton of luck. I think you'll get there. I want you to get your thyroid checked. I want you to stay on top of hers, and I want you to find a way to do not say the right things.
And then see if your daughter doesn't pick up on that, and maybe start having that experience as well. Also, you should probably see a licensed professional. I am probably I'm probably an idiot. Okay. So that's pretty much it.
You good?
I'm good. Yeah.
I really did love you. This was awesome. If I didn't know what a mess you were, I'd track you down if my wife died and your husband left you. But I I I think it would be upsetting after a while. So party.
I think we'd have a good time in the beginning, and then it would go wolfily wrong. Although you would move to Tennessee if I asked you to. Right?
I would listen. Apparently, I'm just whatever. I'm up for anything as long as it doesn't involve health issues.
Because these sons of bitches are arguing with me.
Listen. It is way better. I mean, I'm sorry, but New Jersey is a bit cold. It's a bit gray. Tennessee, not so much.
So That's
where I'm at.
And there's Nashville.
So, I mean That's where I'm at.
Just need to listen to me.
Alright. Listen. God bless you. I I I hold on one second, please. Okay.
This episode of the Juice Box podcast was sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com. The podcast you just enjoyed was sponsored by Tandem Diabetes Care.
Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com. If this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box podcast, and follow or subscribe. We put out new content every day that you'll enjoy. Wanna learn more about your diabetes management?
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#1911 Two Mirrors Part 1
Two Mirrors Part 1
Part one. An RN mom hasn’t slept in nearly two years — her daughter’s needle phobia, anxiety, and lows run the house. Scott hears it all, then offers the advice.
Jump to a moment
- The signs were there on the drive to Maine — the downed frappuccino, the desperate bathroom stops, the midnight thirst — and Amy, an RN, “knew it, but didn’t know it.” The diagnosis call came at a red light, on the car speakers, with Emily in the back seat.
- Emily may be the one kid who should never have gotten a disease built around needles — she was already in needle-exposure therapy before type 1 arrived. Four hours to change a Dexcom in the early months; nearly two years later, she’s still on MDI with a Tandem Mobi finally in the mail.
- Caregiver burnout is the real subject of this episode. Amy has woken every two hours for nearly two years — “I need a four-hour nap and a bottle of tequila” — and only one person on earth is allowed to babysit.
- The family history runs deep: Amy’s mom was diagnosed with type 1 at 40, her grandfather in his sixties, and Amy and her mom both have Hashimoto’s. Her nephew’s unexplained lows prompt a live look at whether lows can precede a type 1 diagnosis (sometimes, rarely).
- Scott’s reframe: people who live with diabetes long enough stop flinching — like people who live where rockets fly overhead. Part one ends mid-sentence as Scott asks, “Can I give you the advice?” The advice is part two.
- Part Two — JBP #1912 — The conclusion — Scott's advice, the two-mirrors talk, and the thyroid checklist
- Tandem Mobi — The pump Emily is about to start; sponsor link
- Juicebox Podcast Facebook Group — Community around type 1 (verify URL)
Every word of the conversation
Welcome0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu.
Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's episode of the juice box podcast is sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at Kontoor Next dot com slash juice box.
Today's podcast episode is sponsored by MiniMed, the innovators behind the MiniMed Flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox.
Meet Amy — Ohio by Way of Everywhere1:49
My name is Amy. I currently live in a suburb of Cleveland, Ohio. I have two kids. One's my t one d and my husband, and we have a German shepherd named London.
I see London. I see France. I see Amy Yes.
On the podcast.
Also, every time someone says Ohio, I just think of that Drew Carey show.
Well, my husband is originally from here. I am not. So there seems to be awful a lot of jokes about Ohio for some reason, and I I don't know whether to join in on the jokes or not to defend my husband, but it's so funny. So I don't know.
Well well, there is a for people who don't remember television, there was a a a sitcom with Drew Carey. I believe it was called I I don't know how they came up with this title. I I believe it was called the Drew Carey Show. And, there was a song, and I don't know any of the song. Like, I couldn't sing it for you now if you paid me money.
All I know is that the last line of the song, someone just goes, Ohio. And I think it, like, and I think it echoes. And that's what I think of every time. So That's
so funny.
Nevertheless, I'm sorry that someone drug you there if you didn't wanna go.
No. Well, it's one of those things where it's such a nice it's a great place to raise kids, but there's, like it's a you know, it's
Now what?
It's like well, it's like it's you know? So I'm from Massachusetts. I was raised on the very Southern West Coastal Maine coastline.
Okay.
And we had the beach. We had mountains. We had Boston. And, you know, you go to Boston, it's like Harvard and and all the, you know, Tufts and all these things, and it's just you're surrounded by, like, education and some of the, in my opinion, best sports teams in the country.
Well, I mean, you're wrong about the sports thing, but the other stuff I'm in, I I I do I do understand what you're saying.
You know? But, and then, you know, it's just so funny. And then you come here, and it's great. There's nothing, like, wrong with it, but it's just like
Is it so from your this is interesting. May I before we get started, I I recently went to Tennessee to look at a a house. And and everyone who's from here says, you're gonna move to Tennessee? And I'm like I I said maybe. And they're like, well, then you'd be in Tennessee.
And I was like, yeah. I think it's really pretty, and there's, like, mountains, and it's, like, I found I found that it was, like, in the middle of nowhere, but, like, very close to something else. And, you know, and I thought but but then this this thing came to me. I I work a lot, and so does my wife. Right?
And we're probably gonna work for ten more years. And so I told I I said to them, I honestly think that on the if you pick the right day of the week, you could pick my house up. If you could magically lift my house up and put it somewhere else, I might not know that I'm not in New Jersey for days. Right. I was like, so what's the difference?
Right. Very
fair. Very fair.
At the end of the day, when I do make it outside for a half an hour, what if I looked up and there was a mountain there and my neighbor wasn't right next to me? Like, what if that happened?
Yes.
I don't know.
We we lived in South Carolina, actually, in Greenville for a year. My son was born there. And so we were very close to Tennessee, and we would go. And you could go to, like, Gattenberg and Pigeon Forge and Nashville. It's great.
Like, I highly recommend Tennessee because I just think it's so beautiful. Thank you. You know, we lived in Manhattan too, so I was very close to New Jersey at one point. So I no offense, but that's a bit busy for me.
It's it's getting busy for me too. Okay? And and I think that's a a function of my age. If we get to a chance later, I will tell you how that right before I did this, I was in the driveway of my house on my phone, ranting at the person who's supposed to pick up my recycling in a way that made me think, I gotta I gotta get out of here. It was like was anyway Yeah.
Let's find out a little bit about you guys now. So Sounds good. Husband, dog, kids, Ohio. How many kids again?
We have two.
Two. And the ages?
So my t one d daughter is 12, and, she turned 12 in March. And my son is eight, and he turned, eight. So he's, like, eight and a half. How
old are you?
I am old. I am 40. I just turned 44 in April, and I just hate saying that number.
I am old, you said. I'm 50 I'm 54.
Well, it's funny because a lot of women my age are like, oh, 40 is gonna be awful. When you hit 40, all of this stuff goes wrong. And, you know, in my thirties, was hearing that constantly, and 40 was fine. 41 was fine. 42 was fine.
And I'm like, they're lying. I don't know what you know, I'm running half marathons every year. Like, I'm like, I don't see what the problem is. And then 43 hit, and it was like t one d diagnosis, 43, everything like, my world is just falling apart.
So Wait till you go
into what they call perimenopause.
Well, yes. I'm like, shoot. Now that's next. There's nothing like there's no good coming. It's all downhill from here.
Alright.
Listen. I I like being positive, but you're probably right. So I I I all I know is my wife's downstairs, and if I brought her up here and she started talking right now, I think she'd go on for a while about what's what's wrong. But but
Well, and it's it's funny because I'm an RN too. I don't currently work. But, like, for a long time, I was always the person scheduling what I call, like, the older people test, like, colonoscopies and all these things. And now I'm like, shoot. That's gonna have to be me some soon, and these little young nurses are gonna be scheduling that for me.
Like, when did that turn? I don't I don't like it. I don't understand it, and it's just all terrible.
There's gonna be some 23 year old girl with an ass like a drum who's gonna flip you over one day and be like, oh, I hope this doesn't happen to me.
That's exactly right. Yep. That's my fear. It's happening.
Mhmm. And it's gonna listen. Here's the thing I said to somebody the other day. Getting old is terrible, but it's way better than the alternative. So
I hope so.
Yeah. But we don't know
what it is. Dying.
Andy, the old the the you're like, wait. What if dying's better than the old than being old? Is that what you're saying?
We don't know what we don't know. Right? Like, you know oh, man. That's funny.
I guess that's why at the end, you do see older people who have lived a long time. They just go, it's okay. I can die.
And and Exactly right.
It's best it that is maybe one of the hardest things to understand when you're younger. When you look at a person who's just like, I'm I'm good with going. You're like, no. You can fight. And they're like, meh.
It's alright. I'm good. I've done enough.
Yeah. Exactly. Really interesting.
The Road to Diagnosis Begins8:25
Okay. So how old is your child when when they're diagnosed?
So she was 10 pretty much. It was, like, the end of summer, and her birthday's in March. So Okay. Yeah. 10.
What what so you said you were an RN. So did you please I I'm waiting for somebody to go. I immediately know what it was, and I jumped into action, but but tell me what happened.
So we lived in England, The UK, for, like, six years.
And your husband's a spy, right, or something? What's going
on? Yes.
Okay.
Alright. I can't tell you more, but he definitely spies on peep no. Okay.
And you guys what have you said to me? Massachusetts, South Carolina, Ohio, England, New York City.
And I lived in Hawaii for four years as well. Yes. Alright. But that was pre kids.
I gotta tell you, you are gonna explain this to me at the end of this episode. So okay. So okay. So anyway, you're go ahead. You're doing what now?
Yeah. So my husband's job, he worked in a British pharmaceutical company and and a different company too. So two different companies took us to The UK, total of six years. While we were there, my daughter got very sick, and she it was, like, it was, like, post COVID, but not really. So it was the rules about who was in the hospital with who was tight still, but you could kinda go to a restaurant.
So it was like and UK was different than America in terms of their regulations and stuff. But she was really sick. Both my kids were her cough lingered, and then it, like, turned bad. And so I went to see our private doctor, and he was like, well, here's a prescription, antibiotic, take it if she spikes a fever. And it was, like, twenty four hours later.
I'm like, this isn't going anywhere. I'm gonna just start giving her this antibiotic. Mhmm. And then, like, probably twelve hours later, she was, like, on the couch, not able to eat, not able to drink, not even able to, like, speak because she was just so lethargic. And I was trying to, like, spoon chicken noodle soup into her and, oh, you know, whatever.
And then we brought her to the hospital. They admitted her. She had pneumonia. And so okay. Fine.
So three days, IV antibiotics. We went home. All's fine. But they delayed the treatment in my opinion. And she's always had my dad backstory, my dad died when I was 10 from polycystic kidney disease, and my daughter has had blood protein on and off in her kidneys since she's been two, which was picked up by a very kind teacher at the Primrose School in Greenville, South Carolina, who just thought we had she we thought she had a UTI, but it was it was just, like, a little bit of an infection kind of.
But, anyway, nothing nothing bad enough to fix anything. There's nothing to do. It's like a benign, hematuria is what they call it. So they're functioning fine. They're just not perfect.
Right? So, like, a filter that's just not perfectly filtering. It's no big deal. We got the pneumonia fixed. We're fine.
Couple years go by. We move home just because we're like, that was a scary experience. Like, the health care in The United Kingdom is really difficult and not great. Let's move back to America, so we did. We picked Ohio because my husband was convinced that the housing market was cheaper here.
So we moved to Ohio, and the summer of twenty four, we went to back to London for two weeks to visit. And we landed, and we were doing our thing. And at summer, not a lot of places have air con in them. She was drinking some water, but it literally didn't I did not stand out in any way. We came home back to Ohio.
Four days unpacked, repacked. We drove to Maine. And on our because that's we do a summer holiday there for about two weeks every year.
Warning Signs on the Drive to Maine12:08
Okay.
And on the drive to Maine, we stopped at a rest area, filled up with gas. There was a Starbucks. She downed a frappuccino in, like, ten seconds, and my son was barely sipping it. And he had never had one before. In The UK, we didn't really have Starbucks very frequent.
So I was like but she loves sugar and, like, sweet stuff. And I'm like, oh, that Emily. Like, now you're gonna get sick. Right? So she had peed twice while we were there, and I just thought, well, maybe like, come on.
You just you're just drinking too much. Like, this is silly. You're just downing this stuff. It's gross. We get back in the car.
We're on 90 heading east, and they shut the highway down because of a massive car accident. They're trying to land a helicopter. So they funnel everybody off on these back roads in Pennsylvania for to pass, like, two exits. And during that time, it was bumper to bumper for probably an hour, and she started having to pee. And she has had to go so bad that she was, like, crying about it.
And I was getting mad because I was like, you're making this drive difficult on purpose. You're back there just doing whatever, you know, drinking because you're bored and whatever.
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'I Knew It, but I Didn't Know It'14:51
So we finally get to a rest area. It it got so bad, though. I thought about asking, like, a random house, knocking on a door, and being like, can my daughter pee? But that's weird. So we didn't do it.
Found a bathroom somewhere, got her settled, got back in the car, got to Maine. The end of the two weeks comes, and she came up in the middle of the night and was like, I'm thirsty, and I have to pee. And the whole two weeks, they had been complaining about the location of their bedroom in this rental property that we had. And so they're a little bit bougie. They're used to Ohio where we have air conditioning in the house.
A lot of main houses don't have air conditioning. It was a hot night, and I'm just like, whatever. You're just being difficult. Go to that. It happened this second night, and that was the last night of the trip.
We're on the coast of Maine. There's no children's hospital with it's, like, forty five minutes north to Portland to the Barbara Bush Hospital or forty five minutes south to Boston. And I was like but I didn't I knew it, but I didn't know it. And I was like, nope. Nope.
Nope. Like, this is not it. We're fine.
She's just a pain.
She's just a pain in the ass. Like, whatever. I can't even handle you. You're just ruining my sleep on my vacation. Right?
Like, so I'm just annoyed. And so we pack the next day. We're driving home, and I'm emailing her nephrologist who we just have annual well checks with.
Right.
So I'm like, listen. I don't know, but I need you to run all these tests. And she's like, okay. Fine. Because we had an appointment with her probably three days later when we got back in Ohio.
Okay.
She's like, fine. No big deal. So blood work. There's a whole another story with needle therapy exposure for Emily because my daughter because she is just terrified of needles. So this was a we had, like, eight people holding her down.
We got the blood work. I expected to be wrong. Like, I was just praying I was wrong. We went to Dillard's, which is a local department store to do some back to school school shopping, And we were driving out at a red light. It turns green.
The Phone Call at a Red Light17:05
My phone rings. It's a local Ohio number. I didn't really even dawn on me who this could be, so I pressed okay on my car. So it's over the speakers, so there's no way of hiding it. And my doctor's on the phone, and she's like, your daughter has type one diabetes.
I need you to get to the emergency room right now. And I just was like and she's in the back seat, and the light screen, there's people behind me. The cars in front of me have gone. I can't pull over. She's, like, thinking she's going to die immediately because she doesn't know what this means.
Yeah. Yeah.
I'm like, oh my god. Like, I don't even know. So I pull over as fast as I can. The doctor's trying to calm her down through the speakers of the car. I you know, I'm just like, oh my goodness.
So we race home, pack a bag, tell my husband, and the four of us drive to the local hospital where the sweetest, kindest, loveliest peds endo is on call waiting for us to arrive. So we get there, and we are admitted for two nights, three days. Yeah. And then
That's it.
Here we are, diabetics. Yep.
Wow. Jeez. That's something else. Was a lot. Yeah.
No. I I imagine. And and did you get to go to Dillard's? Did you do the shopping or no?
Yeah. We did the shopping. It was a great mother daughter day. Like, everything was good. You know, she didn't it wasn't like drinking every day like crazy and peeing every day like crazy.
So I thought, you know, maybe it was just a fluke.
Yeah.
Maybe it was a flu. Maybe it was a little sickness. Maybe it was exhaust heat exhaustion because we go to the beach every day, all day in Maine, and it can get warm. And Right. You know, you're tired.
You're not getting sleep. You're not in your house. We don't have air con like, whatever. It could be a million things.
Why? I asked about Dillard's not because I cared about the shopping, but I was trying to figure out if she if she was, like, you know, how she was feeling. This sounds like she was doing okay that day. I
gotcha. Great. Yeah. Oh, she was walking the little runway within the dressing room, like, trying things on, and Yeah. We had a great we had a great morning.
So
I I like when you say I I have to tell you what. I don't I I'm not going I'm not vacationing anywhere warm without air conditioning, and I don't think of that as bougie at all. I don't think I think of that as fair necessity. But
So funny. Well, we grew up as kids in Maine, and we never had it. You would open the windows, and you'd have a little ocean breeze, and you were fine.
Yeah. But as we went over earlier, Amy, you're old, So that's a different one.
That's exactly right. Yes. The world the climate has changed.
Right? Listen. We we, grew up I don't know if I've ever really talked about this before or not, but I grew up in a rented house.
Okay.
That, was rented to my family by a church. So the church had a parsonage. A parsonage is a place where usually your your pastor lives. And, they were renting it because the pastor had his own house. So I I grew up in a three story home that I didn't belong in.
Like, we couldn't we couldn't actually afford. Okay? But I think I as I look back now in hindsight, I think the church was trying to be nice to my family and everything. I I I see now that I was on some sort of welfare that I didn't understand. But but that but neither here nor there.
We did not that house did not have air conditioning. Mhmm. And we didn't have what you might call money. So, my parents eventually, like, scraped up enough to buy one air conditioner that went to a window. Mhmm.
And what we did was is we basically figured out what the largest room in the house was that we could afford an air conditioner that would fit in, and then we put it there, which ended up being the living room slash dining room.
Okay.
Now the problem is is that there was a doorway into the kitchen, and it didn't have a door on it. But we the the air conditioner wasn't strong enough to actually air condition the kitchen too. So we had to hang sheets over doors to keep the cold air in the space, and then all summer long, we all slept in the Yeah. In in that room. Right?
And I'm gonna tell you right now, I can physically feel right now pulling the curtain aside and walking into the kitchen.
Oh. Like like, how
just wave.
Yeah. That exactly. Just, like, hit in the face of this horrible heat. You know? You tell me to sleep in that now, and I'll say, no.
Thank you. I've I've ascended I've ascended beyond this. I'm not doing this anymore.
So So funny. Well, the houses in England don't don't have air conditioning, really. And so why
we all left.
Yes. Yes. That's the only reason. And we like, the ups they're built so well, and, like, the upstairs just is stifling in the summer. And they don't have screens on the window either.
So you can't open the screens at night because bugs come in, and you can't not open the window because there's no air con. So I don't know how people survive.
Heathens.
Like, because Yeah.
Yeah. No. I understand.
It's awful. It's awful.
I listen. I vacationed in Vermont once.
Oh. And I listen
to that noise she knows already. And so, like so I'm living in society here where where, you know, people live in civilization. I never imagined there wouldn't be an air conditioner at the house that I rented. And Yep. My wife arrived earlier.
Arden and Kelly went ahead because Cole and I were in a baseball tournament. And so she we're now driving to Vermont. She's there. And I remember Arden, this little girl. She calls.
She goes, hey. Mom called and said this house doesn't have mom said this house doesn't have air conditioning. And I went, it's a house. Of course, it has air conditioning. She goes, no.
This house does not have air conditioning. Everyone was mad at me for a full week. I just want you mad.
No. They need a redo on their vacation.
I've never slept so close to a fan before in my entire life.
That's so funny. Anyway Welcome to New England. Yeah.
Pull pull it together, Vermont. Terrible. Yeah.
But so
They're all eating Ben and Jerry's. They don't know it either. Well, I mean, we did
the Ben and Jerry's tour. It was nice.
Yeah. Yeah. Absolutely.
Well, So so impact on you, rest of your family, then I wanna hear about your daughter. But, like, is it I mean, obviously, it's shocking, but how do you how do you process it?
Processing It — an RN and a Mom23:02
Oh my gosh. It was awful. Like, I was just in the hospital, and I'm as I'm watching things from a medical side because I'm an RN, and I'm also trying to be her mom, and she is terrified. And, like, the anxiousness, the apprehensive like, I don't need there's no word that could even describe how anxious my poor daughter is. And before this, ironically, the probably eight months leading up to it, she had the flu shot the fall before, and our pediatrician was like, her reaction to getting a shot is not okay.
Like, she needs to see a therapist. So we went and we saw a therapist who she hated to see, but he was sweet as can be. And he did needle exposure therapy. So he brought in insulin syringes, like the old school kind, to just let her touch and feel and, like, you know, and he actually let her poke him with one and to to just try to get over, like, this irrational fear. Does it help him?
No. It didn't. And it was just miserable. And then we go on these trips and we get diagnosed, and I have to call him and be like, listen. Like, randomly, the one kid in the world who should not have a disease that's based around needles just got diagnosed with type one.
And he was like, what?
Like, this is so random. That that's that's like a
well, listen. We you know, Arden is a has a fairly heavy needle phobia too. So and I I know what she's tried a couple of different things, and so far, none of it really helps.
So Yeah. Yeah. I mean, it's like for blood draws, we have to go downtown. They have to bring in the child life specialist. They have a dog.
They have, like, you know, a gift toy shop, like, whatever. You know, we have to bribe her with whatever it is she want. Like, it's it's awful. It is awful.
But I should say that recently, Arden had to get a blood draw, and she went by herself.
Oh, okay.
And, like, there's definitely part of me that when she came back, I was like, there there's a coin flips chance she's gonna walk in the door and go, well, I didn't do that. And so, but she did. I was really proud of her. So
Yeah. Yeah. That's huge. That's huge. Yeah.
So I had swollen eyes. Like, I was in I was walking around the hospital with sunglasses on my face because my eyes were so swollen from just crying Mhmm. The whole time. And my so my mom has type one, but she didn't get diagnosed until she was 40 when my dad passed away, like, the same year they think it was stress. Her dad had it, but he didn't get diagnosed until he was in the sixties.
And they both were like, no. It's type two, but it wasn't. Like, the doctors were wrong.
Family History — Type 1, Hashimoto's, and Anxiety25:45
Was Amy, your grandfather was diagnosed with type one in his sixties. Your mom in her forties, and your dad had polycystic kidney disease? Yeah. What do you have? You have you definitely have hypothyroidism.
Right?
You're correct. I have Hashimoto's.
Yeah.
My mom has Hashimoto's. And, actually, I got Hashimoto's, like, my fourth month of being pregnant with Emily Mhmm. With my daughter.
Yes. And Emily's anxious, you said too.
Oh, to like, that doesn't even come close. That's the closest word I can figure out to describe her, but it's awful.
A cat in a room full of rocking chairs kind of thing?
Yep. Yep. Like, four hours to change a Dexcom for the first six months of our diagnosis. Like, four hours to put one on and never mind taking the old one off.
I know. Ardent's good. Like, I just wanted to
drink fast. I'm like, I mean, we have done this 800,000 times.
Yes. Yeah. Yeah. So Yes.
Well, what wait. Wait. What what else is so if you listen, you know, like, I I don't imagine that anxiety is autoimmune, but I do think it's inflammation related to some degree. Yeah. And I also think that I and I'll say this over and over again if I have to, but I've interviewed nearly 2,000 people now.
And I think that if I left the type one community and interviewed 2,000 more people, I would not hear this much anxiety from people. Like so I think it's all kind of interconnected somehow. What else is going on? Anybody got celiac?
Not that we know of. No. Not that we know of. No. I don't
Nobody nervous belly? Nobody's running to the bathroom all the time?
Not that I know of. Okay. So I I can get that sometimes, like, when I ran and stuff like that, but I don't know. Like, it's not bad enough where it's like a thing, but it's sometimes. So Mhmm.
I think it's just two Hashimoto's and
the type one. Ones. Well, now three three three type ones now. Yeah. Yeah.
Yeah. How about your husband's side? Anything going on over there besides thinking that the the real estate in Ohio is the way to make a decision?
Mental ill no. I'm joking. So he had, he had anxious he was very anxious in college. Like, almost like panic attacks, but not really. Okay.
But that's it. I don't think they have
his dad. How did
you find each other? High in a therapist's office? What was going on?
We he worked actually for a pharmaceutical company, and he was living in Connecticut when I was living in the New England area. We just met through mutual friends. But
Okay.
Yeah. They
were like, hey. I think if we put you guys together, you'll have a really anxious kid. And so
But I've never been an anxious person. Like, I mean Okay. I lived in Hawaii. I was just chill. I was very relaxed.
Like, my whole life, I feel like I wasn't an anxious person. I was just about having fun and Mhmm.
How about you?
Never. And
Do you have any siblings? Or
I have three sisters. Yep. My oldest one is my dad's child only, so she's my half sister. She has a lot of, like, urinary issues, like UTI chronic UTIs. Mhmm.
They all have had ironically, they have all had blood and proteins in their urine, I believe. I know blood. I'm I'm pretty sure about proteins more than I have. And so when I was pregnant, the doctors were all over my kidneys, and there was never anything wrong.
Yeah.
So I felt like I was skipping that, but I take after my dad more than my mom. Like, my looks, my height, my colors, like, all the things. Mhmm. And those girls the other my full two sisters take after my mom's side more. And, honestly, I just thought if anyone gets anything, it's gonna be those kid the my sister's kids because they kind of resemble her more.
Oh. But I just feel like we got, you know
But
slammed with it.
Any autoimmune with the with your sisters or anything else with them?
Her Nephew's Lows — Can Lows Come Before Type 1?29:44
Not that we know of. My youngest nephew who is, what, five maybe, he recently in the past six months I don't know too too much about it because they're not sure what's going on yet, but he will get super cranky, super, like like, just hangry until he has a snack. And so they are keep checking his blood sugars. And then I went online, and I don't know if it was within your Facebook group or just t one b d parents or something, but somebody actually posted about my kid having a low blood sugar for a very long time, and then they got type one diabetes. Yeah.
And I don't know if that's, like, a thing.
Or It it it is. Like, sometimes sometimes people get low before they get diagnosed.
Yes. Yeah. And he, like, needs a snack, like or he's freaking out apparently. I don't know that's,
I don't
know if that's the the actually, we should figure that out. While I'm figuring that out, let me read this real quickly for people. Polycystic kidney disease or PKD is a genetic kidney disorder where many fluid filled cysts grow in the kidneys. Over time, those cysts can make the kidneys larger, damage normal kidney tissue, raise blood pressure, and sometimes lead to kidney failure. So plainly, the kidneys slowly get crowded by cysts, and the crowding can make them work worse.
Yeah. Common things connected to PKD could be high blood pressure, backside or belly pain, blood in the urine, kidney stones or infection, cysts in the liver, gradual loss of kidney function. Let's ask the question. Why wait. Wait.
Hold on. Is there a medical reason that someone who will one day get type one diabetes would experience low blood sugars. Is that not I think I did that. Right? Yeah.
Let's see let's see what today I'm using ChatGPT. I would have used another one, if it was open, but I was using I was using this one to make images for the website, so it's open on my browser. I look forward to your emails telling me not to use ChatGPT to make images. I can't wait to delete them. Let's see.
Yes. It can happen, but it's not a common pattern. Well, it seems common when I'm talking to people. Erratic insulin release from stressed beta cells, insulin antibodies, autoimmune hypoglycemia, reactive hypoglycemia that is unrelated to future type one. So it okay.
So the three things that it highlighted was in early autoimmune diabetes, the pancreas may still make insulin, but not smoothly. Some research has described post meal reactive lows before overt type one diabetes, possibly from delayed or excessive insulin release. There are published case reports and small studies showing hypoglycemia before insulin treatment in a minority of people later diagnosed with type one. One study found that six of eighty seven people or six point nine percent. Insulin autoantibodies, autoimmune hypoglycemia, rarely the same autoimmune process around type one can involve insulin autoantibodies that mess with the insulin availability and cause lows.
This is uncommon but documented. And then reactive hypoglycemia that is unrelated to future type one. This is probably the more common explanation. People without type without diabetes can get shaky, sweaty, weak, anxious, hungry, or foggy a few hours after eating, especially after high carb meals. The Mayo Clinic notes that reactive hypoglycemia in people without diabetes often has unclear causes but can relate to meals, alcohol, gastric surgery, inherited metabolic conditions, or rare tumors.
Wow. Life. So much fun. So you're
So much.
And and yeah. Good time. Like you said earlier, like, I said, you know, it could be worse. You could be dead, you went
that case, I mean, you know.
Two Years In — Still MDI, a Moby in the Mail33:34
So so
okay. So I think we understand the background of of, you know, your family. So I I guess I would like to dig in for a second. She's diagnosed. She has a terrible needle phobia.
Yeah. And so how does she handle the diagnosis, and how do you get through this? Because now it's what? Three and a half years later, did you say?
We're it'll be two years this August. Two years. So we're not yeah. We're still we're still kind of in the fog. So she's I when she was first in the hospital, she had been in the hospital for the pneumonia in England, and she had the IV, and that was awful.
But that was it. Like, there wasn't multiple sticks and all that kind of thing, obviously.
Mhmm.
This one, you know, just involved waking us up all the time for the finger sticks and all the things. And I just think she thought, like, that would end. Like, there would be that's just while we're here in the hospital, and then we go home, and that's not like that. We have a restaurant called the Yard House that we go to every Friday. It's, like, five minutes from our house, and it's just our Friday family thing to do.
And I remember telling the doc like, on the rounds, I went out because I was so interested in what they were saying, the RN part of me. And I stood there in rounds, and I was like, listen. We're out of here by 03:00 today. Like, I'm done. I can't do this anymore.
So whatever you need to do to discharge us by three, we are going to the yard house tonight. It is Friday. We are out of here. Like, I'm done.
Mhmm.
And I just remember getting to the yard house and being like, I have no idea what the fuck I'm doing. Like, am I going to keep her alive? What is a french fry? I don't know. I have zero clue.
You know?
Everyone were leaving the yard house immediately. Everybody
out. Yes.
The Yes. Poor kid was starving, and I just was like you know, in the hospital, they just try to teach you so many things at once, but also super basic stuff. Like, you can eat meat and cheese. There's no snacks. This is what you do for breakfast.
This is what you do for lunch. This is what you do for dinner. So I was like, this kid can't have a snack ever? Like and I remember my nutritionist, like, two days after diagnosis being like, no. That's not true.
And I was like, oh, thank god. Like, you know, because I don't know what I don't know.
We want 20 dozen eggs and 35 pounds of bacon. We we yeah.
Oh, and she's gonna die now of clogged arteries at, you know, 12. Like, I
don't know. News. Her blood sugar's terrific.
Her her
cholesterol is not looking good at all. Oh,
And then sodium, you know, so then her kidneys start failing. You're just like, damn it, man. Can it wasn't
the really does go through your mind in those two days.
Oh, a 100%. You know? And, you know, and and I haven't slept. I honestly I I feel like I she's still MDI, and we're just, like, two days ago received Tandem Moby in the mail, and we haven't received the the supplies with it. And we're waiting for our training, but this is the first time in almost twenty four months that she's even been like, well, maybe I could potentially let's see.
Try this. Maybe. She could
make run from the needles even though she hates them?
Anything new is so scary to her. Like and not even necessarily diabetes related. Like, if I was, like, try softball. She'd be like, oh, I don't know. You know, like, it's just
Mom, softball.
My god. You know what's gonna go wrong.
Right? Yes. Yep. So anything new. So it's like that was what we were doing.
She couldn't deviate from that.
Aw. Boy, a poor kid.
That's terrible.
Running on No Sleep36:57
It's awful. And I haven't slept in, you know, twenty two one months. And, like, literally, every two it's worse than a newborn. I am up every two hours all night, and my sweet husband, he'll sleep through the night. He travels a lot for work, so I'm I don't work currently.
I'm the primary caregiver for the children. So he gets restful nights when he's away, and he gets restful nights when he's home because he has to work. Like, on the weekends, we take turns and stuff, but I'm like, you know what? Monday through Thursday, like, this is all it's fine. I can try to rest during the day, whatever.
And he'll be like, just take ten minute power naps. And I'm like, for someone who gets consecutive sleep, a ten minute power nap might work. But when you're sleep deprived of that deep restorative restful sleep
Amy, it's
like ten
minute nap. Nap. Fuck you. Okay? Literally,
this is what I wanna say. I need a four hour fucking nap and a bottle of tequila.
About three months, and you all try to stay alive till I get back.
Yes. Yes. And I don't know if it's because I'm mom or and an RN or both or one or whatever it is, but she, for the first, I would say thirteen, fourteen months, wouldn't let anybody touch her but me.
Yeah.
So if it was like, I couldn't even see couldn't even be like, Amy, I got this. Like, you rest tonight, because she would have a massive panic attack because daddy was trying to fix it. And bless her heart, one night, I did go forty five minute away to a mom's night out. It's a diabetic conference thing for parents of t one d.
Sounds fun. Yes.
And it was forty five minutes away, and I got a call during the dinner service at, like, 07:30. She's like, mom, I'm going low. Daddy just gave me a sugar free juice. And I was like, oh my god. This is this is why I can't leave home.
He's like 13
year old's on the phone going, hey. This idiot you married is trying to kill me over here. Okay? Yeah. So
Yeah. Yeah. And my son, who's seven or I think six at the time, he's like yeah. I can hear him in the background. Like, don't worry, mom.
I gave her a regular juice with Sesame Street on it because that's the kind we buy is the little ones with the Sesame Street
on it. So Amy's out going My seven years, they have only one holding this together right now.
Like, I'm not this is so not you're not wrong. Like, there's times, and I'm like, oh my god. This is true. Like, he knows more. I think, in honest opinion, he would know more about pediatric type one diabetes than the average adult ER physician.
I'm not even like, I honestly believe this whole heart.
Yeah. Yeah. Well, it's just sad on its own, by the way. So Oh,
that's awful.
So okay. I think I understand the bigger picture here. And and and so now completely serious, you know you can't keep doing this for much longer. Right?
I honestly feel like I told I I I have had moments where I've just melted down and and, like, you know, screamed at everybody because I don't feel like they quite understand that if mom dies of sleep deprivation, like, or cancer because I haven't slept or sick, whatever, like, my car into a tree because I fell asleep driving, like, I'm not gonna be here to take care of you anyway.
So, like, if I don't I go, we all have to go together. Okay? Because I'm I'm looking up. Like, maybe he could do okay without the kids, but I think with the kids, it's not gonna go well. Maybe maybe just give the seven year old a couple of grand and let him go farrow and see what happens.
You you know?
I used to I used to be in the philosophy of we all fly on a separate plane because, you know but now I'm like, no. We're all together in this one, guys. Hop aboard because if it goes down, at
least is what we need. We need to all go if we're gonna go. You're you're you're in the the crazy, like, you're, like, crazy lady on the news, like, level right now. Well, what happened? I just they can't live without me.
I'm like, they probably would be fine. So so but seriously, they probably would be fine. So, like, you're like, you know what I mean? Like, what do you honestly, they'd pull it together. Right?
Well, you know, I I do think in the I think my husband has been you know, she has, you know, made him feel awful enough for that one night that he's really learned to, like, look at what he's giving her for a low snack. But I just think she is it's a 100% nothing to do with him. He's great, but it's just her personality. And it's just her changing it up from something. And mom's always there.
Mom's you know, I I my body will literally wake up, and then the next change on the Dexcom, it'll hit a low. And I'll be like, my it's just like something in my body.
Why So Many Lows?41:30
Why is she getting low so much?
It's so weird because, you know, I've listened to you a lot, and I'm like, what what am I doing wrong? But she like, I'll do the same thing, the same time, the same food, the same activity, and one night she's 200 plus overnight, and I'm waking up every three hours to give a correction and whatever. And then the next night, you know, I give the same correction right before bed, and she's dropping, you know,
I have night the
Moby's gonna fix a lot of this for you.
I praise God. Like, if they if if it does, I will find the creator of that pump and give them a big old kiss because I'm like, I need someone to come save my life right now. Like, this is but my my anxiety in all of this is there have been plenty of times that the g seven is so off that I am terrified of it being like, oh, she's one eighty, and Moby's like, okay. Here's some insulin, and she's 40. You know?
And I think telling me there are
times that her blood sugar says one eighty, but she's 40?
There's been times the g seven has been a 100 points off. Yes.
But but like that? Or
Yeah. Like yeah. Yeah. Yeah. So one time it was I was checking her, she's and like, mom, I just don't feel right.
And then her actual finger prick wasn't 40. That's an exaggeration. But it was, I think it was, like, 62 or something. And the Dexcom was, like, one fifty or, you know, something you wouldn't have even, like, almost to the point where you're like, you're fine. Like, I don't
know what you're bitching about. You know? But, like, then she's not. She's well hydrated.
Most days, you know, there could be a day at school or something like that where she's not, but I do try to make sure that, you know, she's drinking well enough. I do try to make sure it's in the right spot. I do it's not a compression low. You know, like, with the Dexcom's low and she's not like, all the things, you just but it's like she's standing she put her left foot forward, and the wind's blowing north today. Like, I don't know.
Like, what is the there's nothing that I can think about that changes. You know? You
are in desperate need of a step back.
I am desperate need of, like and we used to have such a good life. Like, for six years, we lived in
You got a good white lady thing going on. I heard it. Yeah. Yeah.
Yeah. Traveled to Italy. We went up on the weekend. You know, we were like, let's go to Rome. Why not?
Let's drive to France, Belgium. Let's do it. You know? Like and believe
doing me that anymore?
No. We live in America, which it's like, where are we gonna go? Michigan? I'd rather not.
You know?
A lot of people listen from Michigan. I love Michigan. I just wanna say that out loud. There's nothing wrong with Also Ohio.
Wrong with Michigan. Yeah.
Well say.
There's nothing wrong with Michigan, but it's not Rome, Italy is my point. You know what I mean? Like, it's not
I hear you. Okay. Well, I mean, I think even the people of Michigan would say that.
This is it. Yeah.
This is it. That's my point. Yes.
'We Used to Have a Good Life'44:28
So yeah. So but but but wait. Let's let's let's slow down for a minute, Amy. Are you so you said you're anxious too.
Well, I'm anxious about the fact that if I do something wrong, she's dead, and you're supposed to take care of your children. Right? So you're supposed to protect them, and you're supposed to provide
them all and You're not gonna kill her. It's fine.
I'm just
You gotta let go of that.
Ugh, man. And it's like, you know, everything has just become so complicated in life. Like, we've flown. We were in Hawaii in April. You know, we go on a holiday every every summer school break, and the amount of crap we went to Connecticut for two days because we're supposed to move for my husband's job now, and Connecticut was the first option.
So we went and being from New England, I was so excited, and we got there. And I'm not like we lived in Westchester County for a little while too, and it's right on that purchase, like, New Cannon line or whatever. And we were there for two days, and everything went wrong. The Dexcom went failed. The second the one I brought for we were there again for two nights, so I brought one extra because the one she had on was supposed to last.
We were in, like, day two or something. It failed. The one I brought, the wire stuck through the hole. Then we spent, like, two hours at CVS trying to get another one, and then that one failed. And then I had to get a third it's like you know, it was just
like Amy Amy, is it possible you're the problem?
No. You never fail on me. They never fail on me.
I just know.
String of them right there.
It was it was a weird thing. And there is there is a girl, and she's posted on her Instagram that she has a theory. Marley, you know, Bane, like that little Yeah.
She's lovely.
She she at one point said if they're made in Malaysia, they tend to have more problems than the ones that don't say Malaysia on the box.
Well, I think the company would tell you I think the company would tell you that's not true, but I don't know. Like, I have no idea. Listen.
You know he does lie, but I saw it, and I was like, oh, she's onto something. Like, all
four of
are from the lantern.
By the way, very well could be. I have no idea. What what I'm saying is that, like, there used to be this, gosh. I wish I could remember the number. There was this theory years ago that one of the codes was a problem.
And and Okay.
And then but you really have to stop and think about this. Like, the the number of those CGMs that are are made and put out into the world Mhmm. Is a massive number. The number of people online is a much, much smaller number.
If Very logical. Yes.
20 of them say, oh, this code is bad, then everyone online goes, everyone's saying it's this code. But Yeah. No one's pinging the other million CGMs that were made this year. And so
Very fair.
Yeah. So, anyway, I don't what I would say is that I don't think that's a good mathematical way to figure it out. I and I'm also not telling you you're wrong because I have absolutely no idea. I would just I would just, you know, say it feels like you got a bad string of them or maybe listen. Maybe a lot of them came out.
A lot l you know, not a lot, but a lot.
The lot.
Yes. Yes. I kept
I could've kept saying a lot over and over again. I wasn't gonna get anywhere. And maybe they came in that area. Like, I have absolutely no idea. Look.
I I Yeah. I'll tell you right now, that goosenecking thing that you talked about. Yeah. When it first came out, I think Arden put three on in a row that did that.
Yes. And it was clearly a
problem, and now it seems to be much less of a problem.
Well and here's the thing. Like, if she was a very chill girl and it's just like, oh, shit. This wire popped through. Let's rip it off and do another one. It would be, like, no big deal.
But it is, like, meltdown. Like, it you know?
Well, I don't wanna I don't wanna undervalue her situation, but I also don't wanna undervalue other people's situations. I think it's a big deal for anybody. I think I think that, like, you know, you don't wanna stop and change a device, And then you No. You do it, and then it doesn't work. You're like, you gotta I gotta do this again.
And then not only do I have to rip it off, poke myself again, but now I gotta call the freaking company and tell them it didn't work so they can send me another one. And then now there's people online going on, but you can do it through your app. I'm like, I know you can do it through app. And then and, like, you know, to be you still gotta go through all that problem, and it is frustrating.
Yeah. And and and there's just
Absolutely is.
Yeah. And there's nothing worse than seeing your daughter or your child so sad and so scared and so upset and so worried. And I think she's worried she's going to die. Like, she will not wake up in the morning
or she will die. From you? I
don't think so because I'm not I've never ever been like, oh, this is this is that. Like, she'll have a trouble.
You just told me you're afraid that if you mess up, she's gonna die.
Well, that's me, but I've never put that on her. Like, when I'm around her, she'll be like, I'm a mom. I don't feel good. I'm having a lot. I'm like, that's alright.
Just sit down. We'll poke your finger. Let's get a juice. Let's figure it out. You know?
Like, a
beer a coffee. You're you're you're Hawaii Amy, one on one yourself. Yeah.
Okay.
You're like, oh, it's gonna be fine. We'll meet a handsome boy. We'll stay in Hawaii forever. Yeah. Yeah.
I right there.
But I think, like, in the back of my head is like, even as an RN, if I was working, I'd be like, okay. I gotta do the five rights here because if I mess up this medication, like, that's that. Like, so it's it's a general, this actually could happen. Am I losing sleep about potentially killing her? That's not the reason I'm losing sleep.
You know? I'm just I always.
Up down. Up down.
In the beginning, I couldn't sleep, and I don't think my body has gotten past that you need to be awake in case something happens. But during the day, I'm not like Can I tell check and follow every ten seconds?
Tell you what really happens is they get older and they become a bigger pain in the ass.
You come you come
less worried. You you come less worried about whether or not people die or not. You're like, you know what? I've had enough of all of you. So That's you're
oh, man. That's so crazy. Like
oh, yeah. No. Like, you know, obviously, I I don't want anybody to die. But but
I be same.
Rockets Overhead — Getting Used to It50:20
But but, you know, like, I'll use it. I can just use yesterday as example. Arden finished her last her last final. It's her you know, she's got, like, three more classes left, and she graduates. Her boyfriend's graduating now.
All of her friends are graduating now. So they went to a they went to a house party yesterday, and and she lost her signal. I'm gonna guess she put her phone down. Right? Like and but she didn't have a signal for hours.
And I have to tell you, I never worried about it once. Yeah. And then and then and then she got her signal back, and her blood sugar was too high, obviously, because she was probably snacking and and whatever else she was doing and not getting insulin from her automated system. And then it came back online. I gave her insulin.
She went down. And I'll tell you right now that five hours later, she got low. And then she drank a juice, and it was all fine. And I never worried about it once. I think there's Amy, give me a second.
I think that that the time that I've been doing this like, I can now see how eight years ago, someone with type one, an adult, would have listened to me and been like, this guy he doesn't have the whole picture yet. And they would have been right. And I don't have the whole picture now, but I have a lot more of it than I did eight years ago as an example. And eight years ago, I would have sounded like you. I've been like, oh my god.
The signal went by. This thing doesn't work. You gotta do this. Like, it's gonna be a problem. She's gonna die.
How's the algorithm not gonna know what to do? Is she gonna get too much insulin? And I would but you know what? Then I meet a ton of adults who have type one diabetes, and they all have something in common. They're they've been through it enough that they don't they don't flinch anymore.
They're like they're like people who live in a war zone. When Yeah. Like like, if you shot a rocket over my head right now, I would probably die. Like, I would probably, like, short circuit fall over and and explode myself. But there are places in the world where rockets fly over people's heads all the time, and I've seen videos.
They don't even flinch.
Oh my goodness. Yeah.
They're just like, this is what happens here, and you get used to it. And I think that that's a it's a bombastic example, but I'm telling you, I think maybe it's not when it comes to diabetes. Like because you feel like you're gonna die. You feel like she's gonna die. Something terrible is gonna happen.
But if you live through it long enough and have enough experiences, I don't think that feeling I think that feeling goes away to some degree. Yeah.
I yeah.
You know what mean? Now for her or somebody who's that anxious, maybe it's not gonna be that way for her. But for you, it could be because I I I genuinely wasn't worried yesterday.
Yeah. That's good. No. I do feel like I've improved. Like, the first twelve months was awful.
I would say the last, you know, six months, I've kind of felt like today is, you know, this is the worst thing that could ever happen to us. We had such a good life. Like, this is like, there's so much has changed. This sucks. It couldn't get any worse.
And then I'll wake up the next day, and I'll be like, you know what? She's not in a wheelchair. Like, she has you know, she could be stuck in a hospital bed. She could have terminal cancer. Like, every you know, she's fine.
She's gonna get on a pump one day. Her numbers will be more stabilized. Her kidneys won't fail because she potentially already has a precursor to a problem that could be exacerbated by the diabetes. Like, all that stuff's going to be fine. We're not even two years in.
We have to still find our rhythm. You know, she's a kid. She's 12. She's going through puberty. That's gonna change a lot of things day to day.
You know, I don't restrict her food because she's already had so much taken away that I'm like, eat a doughnut. I don't care. We'll just give you insulin for it. Like, she's not I'm not strict in that way. Yeah.
Amy, worry And then
worry is a waste of imagination is a is a phrase that I find really helpful because what you might not be wrong, by the way. Like, something something terrible might happen twenty five years from now. Okay?
Yeah.
But there's literally nothing you can do about it today.
True.
Right? Yeah. But, I mean, there's some basic things. Prebolish your meals. You know, make sure you understand the impact of your food.
Try to keep blood sugars from being wildly up and down, like, look for stability, try to get an a one c as low as you can that's, you know, comfortable in your life. It doesn't cause, like, problems. And then, I mean, I there's that old, like, country song. Right? I beg your pardon.
I never promised you a rose garden. Like, what did you think life was gonna be perfect? You you you know what I mean? Like so, like, there's gonna be problems along the way, and I guarantee that a a well rested, not out of her mind Amy does a better job in that moment than the one you are right now. You you know what I mean?
Like and so, like, I don't know that you're ever gonna be like, hey. The rockets are flying. I don't care. Keep playing. Like, I'm I'm outside playing badminton.
I'm not gonna slow down. Like, maybe you're never gonna be that person, and maybe you shouldn't be. I have no idea. But, like, I I don't I for everyone listening and for you, I would just tell you that as your experiences pile up, you should take stock of them and and try your hardest to not stay stuck where you are. Because right now, you're what I've heard you say we used to have we used to have a good life.
You must have said it four or five times already. Yeah. I would argue you still have a good life.
Fair. And that's fair. And and here's the thing. Like, in other parts of my life, I'm so easygoing. Like, I was a first time mom with a two month old baby who had to move to The UK for my husband's job.
I had to learn how to drive on the other side of the road with a I had to learn how to be a mom. My husband left to go to Brazil for work, like, a week or two after we moved there. So I was like, where's the grocery store? Like, you know, so there but I was like, whatever. We'll figure
that out.
You were you were like, So I can do
I got this.
So this is the
Texas, and a Cliffhanger56:12
One one month from now, we're moving to Texas for my husband's job. I've never had Texas in my, you know, in my vision.
Where in
Texas? Just West of Plano, he's working in his offices in Plano. So instead of Connecticut, we picked Texas because there's sunshine and warmth and, you know, whatever. I guess, you know, cheaper homes, and it's beautiful.
Amy, no no no, no, tax, state income tax either.
This is the other thing.
I didn't I didn't pick I didn't pick Tennessee by mistake, in case you're wondering. And so Connecticut
and New York were like, that's a double whammy, where if we go to Texas, we can, you know, save a few bills. So, you know, that's what we're gonna do. And I've had friends who have been like, I would have a toddler fit if my husband said we had to move to Texas. And I'm like, really? Well, whatever.
We've moved nine times, and I just do it, and it is fine. And everyone's like, how are you doing that? Like, I have
to just move. You translate this to that?
I don't know. Scott, if you could answer that question for me, we would both be so happy.
Well, can I give you the can I give you the advice?
Yeah.
Yeah. I mean This episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's gonna be the next episode in your feed.
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#1910 Dancing with the Devil
Dancing with the Devil
Four months in, a dad shares how a family holiday nearly ended in tragedy — his 15-month-old rushed into DKA after being sent home twice with a “chest infection.”
Jump to a moment
- DKA can hide behind a “chest infection.” Heavy, labored breathing, mottled or cold skin, listlessness, and constant thirst are red flags — if a young child looks this sick, ask specifically for a finger-stick blood glucose check.
- Splitting the basal helped overnight. Dosing Levemir twice a day — roughly half in the morning, half at night — steadied the overnight lows that a single bedtime dose had been causing in a small child.
- For a toddler who may not finish a meal, timing matters. Instead of pre-bolusing a full meal he might refuse, bolus as the food goes in — or pre-bolus only the carbs you’re certain he’ll eat (like his milk or peanut butter on toast), then dose the rest once he’s actually eating.
- Caregiver exhaustion is a real risk. Broken sleep from checking a child every half hour catches up with you physically, even when you don’t notice it — protecting your own rest and mental health is part of managing the diabetes.
- Community is comfort. Tom found that simply hearing other families’ stories was reassurance that “it’s not just you” — a reminder that shared experience is one of the unsung support systems of a new diagnosis.
- Bold Beginnings Series — Scott’s starting-point series for the newly diagnosed — the foundational how-to for the first months with type one.
- Diabetes Pro Tip Series — The next-level management series Scott points Tom toward once the basics start to click.
- mylife YpsoPump (Ypsomed) — The algorithm-driven pump Kylo started on — offered on the NHS for children under two.
- DAFNE — Dose Adjustment For Normal Eating — The UK type one education programme Scott recommends; heard on tape as “DAPHNE.”
Every word of the conversation
Meet Tom — four months in0:00
Welcome back, friends, to another episode of the Juice Box podcast.
I'm Tom. I'm from Dorset, England, and my son was diagnosed with type one diabetes four months ago.
Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's podcast is sponsored by US Med, usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514.
The show you're about to listen to is sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox. Hey. Quick word from a sponsor.
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Four months ago. Wow.
Four months ago.
Yeah. Twenty twenty six. How old is he?
Now he's just nearly 20. So diagnosis, was 15.
Oh, Tom. How many kids do you have?
Just one. And only one now.
Yeah. Like, this was our first try.
Yeah. We did something wrong straight away.
We'll just mess everything up right in the beginning, and that way we'll have plenty of time to fix it. What what how long have you been married?
We've been married two years, three years this year.
Tom, how old are you?
I am 32.
32. You've been married about three years. And Yeah.
But been together for eleven now, I think.
Oh, wow. Yeah. How'd that take so long?
Life, you know, gets in the way, don't it?
Yeah. Certainly does. Wait till you see. That thing's gonna really double for you.
Oh, I bet.
Oh my gosh. Well, first of all, I'm sorry. That's, terrible. And, I can't imagine how upsetting it must have been for a young family to go through all that.
It was intense. Yeah.
Yeah. No kidding. What were, did your your wife your you you're mad. Yeah. Did your wife have gestational diabetes by any chance or anything?
No. She didn't. No. We were checked, obviously, but all that was good.
Mhmm. And in the family, other autoimmune stuff or type one in either side?
Yeah. So, obviously, because of this, we've started digging into our family history a bit. And on my wife's side, she's got her dad has the hypothyroid, I think Mhmm. Is what it's called. And then on my side, a couple of distant cousins.
One of them has celiac. Okay. Yeah. You found a little Yeah. Nothing really.
Well, now but now you got the type one. Yeah. Yeah. What you would would you tell me what you named your son?
I named him Kylo.
Kylo? Yeah. From the movie?
Well, my wife said that we were looking at names, and she was like, oh, I really like Kylo. And I was like, oh, yeah. From Star Wars. And she was like, no. I was like, well, let's go with it anyway.
Just
so you know
She let me pick the middle name. So How
does she let you pick the middle name? Yeah. Very nice of her to let you do that.
Yeah. I know.
Well so in your mind, he's named after a Star Wars character. In her mind, it's something she saw in a book that she thought was attractive?
Exactly. Yeah.
Listen. However it works. I I need to I guess I need to understand what you guys saw, how you figured out that he had type one.
A holiday in Cape Verde4:13
Yeah. So we were on holiday at the time. We were at Cape Verde. Mhmm. We'd been treated to a free vacation, basically, because of the death in the family.
So the the death it's my stepdad's dad. His wife treated us all to this trip to Cape Verde. So we were out there and everything was going fine. It was we landed on New Year's Eve of last year. Yeah.
We thought, oh, it's gonna be a perfect start to the year. Here we go. You know, seven days in the sunshine, all that. And from the start, he was a little bit not himself. He was sort of clingy.
You know, he he didn't wanna get down from being held and stuff like that. Mhmm. Whereas, normally, he'd love to sort of play around and stuff. But just more and more as the days went on, we started noticing more and more that he wasn't himself. He was really slow.
He was drinking a lot, but he's drunk a lot his whole life. So I I don't know if that's, you know, that was anything different to us at the time. But so he started wetting the nappies before we went away. Yeah. But because of his age and stuff, we were swapping between nappies nappie sizes.
So we just thought, oh, that's what that is. You know? It's it's just him growing, and we're getting the nappy sizes wrong. But then on holiday, he started throwing up. So sorry.
I'm just gonna check. I wrote this all down because I'm pretty good at forgetting stuff. So
You're good at forgetting? Listen. So far, you're doing a great job. Except if you would have said we went on holiday to Tatooine, I think that would have been amazing.
Know, it was like Tatooine. It was just sand and rocks. Yeah. So so he he didn't wanna do anything while we're on holiday. He was just cuddling me the whole time.
Mhmm.
And a couple of days before we were set to leave, maybe three days, his his breathing started going a bit funny. He was, like, you know, just short of breath all the time.
Yeah.
So we we were asking like, my mom was there and stuff. We were asking what this could be, and she was like, maybe it's croup or something like that. Maybe he's caught something on the plane. And then the next day, it was still really bad. He was just he wasn't eating any food, just drinking water and just breathing really heavily.
“Just a chest infection”6:46
So we took him to the doctors on the island. It's it's like this resort, and they've got, like, a on call doctor there, basically. Yeah. So we took him to the doctors. They did some basic checks.
They didn't check his blood, but I guess they weren't thinking it was diabetes at the time. So they they checked his blood. No. Sorry. They didn't check his blood.
They checked his height, weight, all that, and decided that he had a chest infection and basically gave us some medicine for that and sent us on our way.
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The flight home, fighting for breath9:30
But then the day we were supposed to go, so we'd been up on all the night before, worried about him checking on him, make sure know, he was still alive basically because his breathing was so bad. And that that morning, he was just like his skin was mottled. He was his hands and feet were cold. Everything, you know, just terrifying us. So we went and got another check with the doctor, and they were like, no.
It's alright. It's a chest infection. He's alright to fly. We're like, okay. And so we ended up flying back to England.
And the whole time on the plane, his breathing was really bad. He just didn't wanna do anything. He slept for a lot of it. And when we landed, we were just like, right. We're gonna we're gonna it was about a three hour drive back to our county from the airport.
Mhmm. And we we're like, right. We're we're just gonna do the drive, get back there because it's a really good hospital, especially for children, our local hospital. So we're we're thinking, right. We'll just get him back there.
And in the car, his breathing was just like he he got so bad and sorry.
No. Tom, can I tell you something? Yeah. I'm gonna cry, just so you know. I think it's No.
You don't need to cry.
No. No. No. I'm telling you, like, it's just to sit and listen to your words and picture, you know, a baby that age, and and also having a daughter who went through something similar. I mean, she's a little older.
She was two when it happened to her. Yeah. But I know what you were going through, and I also understand the medical implications of the the stuff that you're describing. Like, you know, your your little baby is dying there, you're dragging them from Cape Verde to England and then trying to, you know and and now you're thinking about it. So take your time.
It's okay.
Perfect. Yeah. And so on the journey, his voice, he was, like, going, like, you know, like it felt like he was sort of, like, gripping on, which we didn't think he was at the time, but clearly, was. Poor little guy was fighting for his life.
Yeah.
The resuscitation room11:44
But so we we get to the A And E. We sit in the triage. It was about three in the morning at that point when we got to the A And E, So there was no one else there. They we sat there for maybe five minutes, came in. The nurse asked, you know, this and that.
Is everything alright? Checked her checked his finger, you know, did the blood glucose. Then next thing she's like, Oh, just follow me please. She was fast walking, Olympic athlete level walking from the triage straight into the ICU. At that point, my wife and I were like, Oh, what's going on here?
It's supposed to be a chest infection. Why are we doing this? Then before you know it, we were in the Resuscitation Room of the ICU. 15 nurses and doctors and stuff were in there. They were putting cannulas into his hands, his feet.
They couldn't get enough blood out there, so they ended up putting a cannula in his jugular as well.
Oh gosh.
He had a tube down his nose and, obviously, like, oxygen and blood monitors and stuff like that. So he had wires coming out of everywhere, tubes coming out everywhere. And then that's while while they were sort of, you know, prepping and prepping him in there, they would explain to us that he was in DKA. Mhmm. Obviously, we had no idea what that was.
You're like, no. It's a chest infection.
Yeah. Literally. Well, like, the doctors in
The doctor from the love boat told me that it was just a chest infection.
Yeah. Exactly. So so and at this point, I I guess I don't know really, but he he just before he was sort of, you know, crying not crying out, but, you know, like, making noises and pain and stuff. I think at this point, his body had just, like, you know, completely been like, right. They're doing this because he he didn't even cry when the cannula went in his jugular.
He was just sort of limp there. The the one thing that I was super happy with is at the start, they said, you can lay on the bed with him and have him on your chest. Mhmm. So I laid on the bed with him, and I literally didn't leave that bed for about ten hours while they were, you know, working on him, doing stuff.
Yeah.
And they they prepped him. They they explained to us that they might have to induce him into a coma and take him to a nearby, like, big hospital. And at that point, I think me and my wife were just like, oh, this is serious, serious. But luckily, his level started to flip the other way, and so that wasn't on the table anymore.
That's pretty awesome that they were able to do that. Yeah.
I that this hospital gets, you know, pretty good. I wouldn't say reviews, but, you know, everyone says that it's a really good hospital, especially for kids. And
You'll be you'll be one of the people saying that in the future too. That's
Absolutely. Yeah. No. I'm sure we'll talk about it later, but their their whole children's ward and stuff is incredible.
That's awesome. Hey. Listen. Are while this is happening, your wife and you, are you are you separated from each other? That like, I don't mean physically.
I mean, like, are you interacting with each other or are you so stuck inside your own body in your head that it's hard to even know that she's there?
No. Actually, because so my wife, she won't mind me saying this, but she's quite a nervous person or anxious. She she's not good in, like, high high stakes situations like that. So as well as sort of, you know, holding my son, Kylo. I was looking over to check.
She was okay. He's sort of calming her down saying, it's alright. We're in the best place we can be. Luckily, my grandma my mom, sorry, Kylo's grandma, decided to come with us to the hospital instead of going back to her home.
Okay.
And so she was there to comfort my wife as well while I was sort of, you know, looking after Kylo a bit.
Yeah. That's something you feel like an adult, and then all of sudden, you're like, thank god my mom's here.
Literally. Yeah. Yeah. No kidding. I feel like that way too often.
Well, I'll tell you, when your kids are sick, it it it it may used to make me feel like I was five, and I didn't know what was happening all the time. You you know? And you're you're dying for somebody to tell you something, and, you know, oftentimes, you know, if you're lucky like that and your family can be around, that's really wonderful. So you're the one that laid in the bed. My wife did the, I my my wife sat with Arden for, I think, for, like, a day and a half or two days in a bikini because we we because we came from a it was like a beach, and my wife was just in a sarong and a bikini, like, they like, holding her, and I don't think she ever got up.
Like, she just held her the whole time with all the tubes and everything, and Yeah. It is very it it once you see the you know, like, once you get to the part where you're like, wow. This is, a life or death situation. It every everything just, you know, kinda goes away except for what's happening. How long until he was back to himself?
Coming back to himself16:43
So he probably took about a day before he was getting more like himself. He's he's he's such a lovely little boy. He's so bubbly and happy and cheerful and smart and just the best. And so seeing him like that was just, you know, horrible. But but he first, he was just sort of more himself around us, but as soon as any nurse come came in, he'd just be like, no.
Like, basically telling him no. And but by the by the end of our stay in the hospital, he was running around the wards, being funny with the nurses and you know? So it it took probably a day until I started seeing him again. Mhmm. But it did worry me actually because one part of it, they took us in for a CT and a chest X-ray to make sure he didn't have any fluid on in his chest or brain.
And when they said that that was a option, you know, that that could be a thing that they wanted to check, me not seeing him how he was, I just thought, oh my goodness. Is this why he's not him? You know? Yeah. But luckily, all of that came back negative.
So it was just him exhausted from fighting for his life.
Yeah. Oh, it's really crazy. Wow. Here's what makes Twist different. It measures the volume of insulin delivered with every dose using Soundwave technology.
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You enter carbs, then something changes, and you do not actually eat what you planned. With Twist, you can go back and correct or remove the carb entry, and the system adjusts based on the new information because diabetes does not always follow the plan, and your tech probably should not expect you to either. So at what point do you start trying to understand type one diabetes, or is it just a fight for life the entire time, or is there a moment where you think, like, okay. He's stable. We're gonna be leaving here one day, and what do I need to know?
Yeah. So for the first probably day because, I mean, by the by the time we got settled down in the room and were sort of left to our own devices on the first day, me and my wife had been up for thirty nine hours at that point. So Yeah. Anything that went in on that day was sort of a blur. You know?
Learning type one, and the honeymoon hope19:35
But the next day, they sort of sat down with us, explained to us what type one is, you know, what the treatment is. And at first, I was sort of like, oh, could there be something that, you know, makes it look like it's diabetes but isn't? Because I was thinking I don't want my son to have this lifelong illness.
Sure.
They're like, no. It's diabetes. I was like, okay.
You sure you sure it's not just a cold and it's gonna go up? Yeah. Yeah.
Yeah. Are you sure? Could be, you know, he stubbed his toe or something.
I don't know if you've ever heard me say you've you've been in this a little bit of time. You probably haven't heard this, but I think Arden had type one for I don't know how long, honestly. I didn't know much about it back then when she was first diagnosed. Right? But she clearly had these couple of days where her honeymoon was so significant that she almost didn't need any insulin at all.
Wow. And after maybe the second day of it, I called off my friend who's also my kid's where was my kid's pediatrician? They're older now. They don't have a pediatrician anymore. And I I prefaced the conversation by saying, I know I'm crazy.
Just tell me to shut up and get off the phone, but is it possible Arden doesn't have diabetes that you got like, somebody got this wrong because I haven't had to give her insulin for a couple days. And he was like, yeah. No, man. Like, she's she's got type one. Like, try to let that go if you can.
I was like, alright. I didn't understand. Actually, back then, nobody said honeymoon or I think that wasn't a thing anybody actually ever said to me. So, anyway, it was just these magical couple of days where she didn't need insulin, and and immediately your brain goes right to where yours was. Like, maybe it's something else.
You know?
Yeah. Yeah. It sucks. Absolutely.
Yeah. Well
It's all the glimmer of hope in there.
Yeah. Yeah. The tiniest bit of you just think, like, oh, maybe, you know, maybe. You were talking about the exhaustion, and not being able to remember anything from it. That hit me while you were telling the story.
I'm like, I I I wanted to ask you. I didn't wanna break up the story, I was like, how what's the flight like from Cape Verde back to UK? Like, how long had you been traveling?
So we got up the the day we were left to fly, we woke up at six because we had to get everything packed and out of the hotel by, like, 11:12, I think it was. Mhmm. And then it was sort of three hours to the airport there, eight hour flight, three hours drive back. So we've been traveling for, you know, over half a day.
And not only that, but the the evening before, you weren't really sleeping. You were staring at the baby. Right?
Oh, yeah. Yeah. Every sort of twenty minutes, I was waking up holding his chest, seeing if he was still breathing.
Yeah. Isn't it isn't it really magical kinda what your body can do? Like, in any other situation, if I told you to stay up that long, you'd fall asleep. You you know what I mean? Like, you wouldn't be able to do it, suddenly it's for that kid, and you're like, well, it's no problem.
It's it's magical. You're also making me think of you you know, I had I had a gentleman on maybe six months ago whose child was in a very similar situation and passed away. They didn't get to the they didn't get to the medical care. And, well, they did, but the medical care kinda didn't didn't help them correctly. And it just it's it's like, I'm so happy that's not your situation, but at the same time, like, I don't even know if do you know how close you were to that going the wrong way?
Dancing with the devil22:49
Have they ever talked to you about it?
Yeah. Not really. I mean, only from the reaction in the ICU, you know, how quick they they were because it was early in the morning, you know, they were calling in the diabetes specialists and, you know, ICU specialists to come see us and prep an ambulances for us and stuff. So at that point, I think it was quite close. Yeah.
I wonder, you know, if what if it was one more day on holiday sort of thing.
Oh, for sure. I mean I mean, I I don't wanna talk about it like that, but I I think from your description of the Kussmaul respirations with the breathing, you know, the skin color changing, listlessness, then the the noises he was making. I mean, I mean, I'm so happy for you and him and your wife, but, man, you guys were you were you were dancing with the devil. I don't even think you knew it. You you know?
Yeah. So oh my gosh.
All the time.
Yeah. Yeah. So tell me what happens then. I mean, this is a very short period. Like, you don't know you still don't know about diabetes.
You're only, like, a few months you're still a few months into it. Right? But, like
Oh, yeah.
Where's the learning begin? Like, what's the first thing someone tells you? Why do you know who I am three months later?
Yeah. So the the first day after everything happened, the next day, we were having visits from their diabetes team explaining to us, you know, we'd see the diabetes specialist. We'd see the nutritionist. We'd see the the head of the diabetes I don't remember what it's called, but, like they've got a whole team there in the hospital for the diabetes. Yeah.
The NHS, Dexcom, and the old-school way24:19
And so the doctors would visit us as well, and each one would explain a little bit at a different part of the day. And so as the day went on, they explained to us what they're doing because I think he was he was still getting insulin through an IV or the cannula before maybe for another day or so until his levels even though. I can't remember exactly, but we didn't start doing the pens until a couple of days in, I think.
Okay.
And they they started helping getting us to count our carbs, sort of, you know, quizzing us on it, seeing how we do, checking our notes, showing us how to do it and all that
Mhmm.
With the finger pricks and everything. And by so we were in the hospital for seven days, I think, six or seven days. And on the very last day is when they give us the sensor, the glucose
the glucose? Dexcom Libre?
We've got a Dexcom six.
Okay.
I think they wanted to give us a seven, but at the time, there wasn't a pump that was for his age that worked with the Dexcom seven.
Okay.
Or as how it's explained to us anyway.
Well, they so they gave him a pump too?
No. So that they wanted us to have a few months at home doing it the old school way, you know, with a pen and that. Uh-huh. I suppose not the old school way, but the old school way from before a pump. Yeah.
Yeah. Yeah. So they wanted us to really be sure if you know, in case the pump ever went wrong or for whatever reason we we couldn't use the pump, they wanted us to be able to have something to fall back on.
Mhmm.
Which I think is why they left the sensor until the last day. They wanted to make sure that we were confident on
our own. With the testing, with the, like, finger sticks and everything.
Yeah. Exactly. Yeah.
How does he how does he deal with that?
He's really good with those, actually. So the the pens, he doesn't even bat an eyelid with so much. So we give him one to play with every now and then without a needle, and he'll even lift his top up and pretend to put it in his belly. Mhmm. So that he's fine with.
And the finger pricks, he he really is fine with that as well. We call it an ouchie, but he just does a pretend ouchie. He like, oh, like, as a joke sort of thing. So he's really good with that.
But how we do is he again?
So he's nearly 20. So he's about a year and a half, basically.
He's got a whole personality.
Yeah. Yeah. He he really does. He's such a little unique boy That's awesome. In the best way.
Tom, that's wonderful. Yeah. I'm sorry. But but so they you you so you're doing pens right now with the CGM?
No. So we've literally just in the last couple weeks got Yipsa pump, I think it's called.
YipsaMed?
YipsaMed. Is that
how it is? Yeah. Yeah. Yeah. I know that.
Okay.
Because I think, again, like they they mentioned to me before, it's the only one for under two years that they recommend
Okay.
At least with our health system. You know, that's what they say.
How is that paid for? Is that like, do you guys have private insurance, or does the the government pay
for it? Yeah. This is all on the NHS, the National Health Service. Mhmm. So from the start, we haven't paid a penny, basically.
Wow.
All of our prescriptions are free. And because it's a lifelong condition, he gets them free for life. We have they constantly you know, he's got access to the children's ward at the hospital till he's 18. He he gets regular calls from the diabetes teams, dietitians, and stuff like that. Mhmm.
In fact, just before I come on with you, we are having an online call with his diabetes doctor talking about the pump and, you know, changes to make in that.
Very nice. Do have they offered you the DAPHNE program?
No. I haven't even heard of that.
That so look into that if you care, but it's a it's an educational program about managing type one diabetes that's, unique to The UK, and people really love it. Okay. So if it's if you think if you feel like you need more, that's a good place to look.
Cool.
Yeah. Yeah. So they're making changes to settings. So, I mean, how much insulin is he possibly getting? How much does he weigh?
He weighs twelve kilos now.
Well, that's how many wait. Hold on. I'm not gonna figure that out on my own. Is that twenty four pounds?
It's twenty six pounds.
Twenty six. Okay.
I I made a little conversion chart on Excel this morning because I thought this might come in handy.
Thank you.
But when I well, yeah, because when I first started listening to your podcast that you're like saying your guests were saying my kid was, you know, his blood glucose level was 300. And I'm like, Jesus. That's huge. You know? That's crazy.
But then I was like, oh, okay. Yeah. You guys use a different unit to us. Yeah. I should have guessed.
But
No. But, I mean, it it really does outline all the things that are new and that you're gonna learn over the next year or so. Just every day might be a new experience, you know. Yeah. Who's who's in charge?
Like, is like, what's your division of labor setup like on the diabetes? Are you guys splitting it? Is it more you, more your wife? Like, how are you handling all that?
So I would say I'm probably the most hands on with it in charge of the overall, you know, diabetes care. But my wife's my wife doesn't work two days a week, so she has him two days a week, and she's really good at looking after him. But stuff like when we change his sensor or when we change his cannula for his pump, she's still a bit wary about that. So she's done it a few times, but not as you know, I do it most of the time. You said something?
It depends on that.
Yeah. Yeah. So who it falls to is okay. You you both are pretty comfortable with it right now. Yeah.
And you mentioned earlier about her not handling, like, big issues. Well, is she anxious?
Yes. Yeah. She is anxious.
Okay. Interesting. So, is that rearing its head for her? Is she able to overcome that for this problem, or how is she doing?
Yeah. I think so. She she did go to her doctors about it, which is getting a bit creaky. She she has gone to the doctors about it, so she's getting treatment for it. But before that as well, she she does handle it really well.
It's sort of once she's done it a bit, she's sort of overcome it, if that makes sense. Sure.
Yeah. No. I mean
Even with her jobs and stuff, she she went into a supervisor role with us, and at first, she was really worried about it, but now it's, like, one of the most profitable bits in the company. So
Oh, so she worries upfront then figures it out and then kinda lets it go after that?
Yeah. Exactly.
And finds a different thing to worry about.
Exactly. Yeah. The same with when she she was learning to drive, she was like, I'm never gonna do it. Then she passed with no minors or anything, you know Mhmm. Flying colors.
It's like
That's the difference between men and women, by the way. We blindly just believe in ourselves, and they doubt themselves even when they don't have to.
Oh, yeah. Yeah. Blindly to a fault.
Oh, absolutely. Ask me how perfect I am. I'd be happy to tell you about it, Tom. Well, that's nice that she went to do something for herself. Was that precipitated by the diagnosis of your son?
Did she feel like I need to work on this now?
I think she's dabbled with it in the past as well, but never really found anything that's worked with her. Okay. But this time, I think she was just she she never gave it a proper try, but I think this time, she's like, I'm doing it for Kylo. So
It's wait till you see how that happens. That that's a very common I I guess, a very common story for people. They they will, they will put off helping themselves over and over again. But if you give them the opportunity to help themselves so that it'll help a loved one, they don't seem to have any trouble with it. It's really Yeah.
Really very interesting. Your wife doesn't have anything else though. You mentioned thyroid. Is the thyroid on her side of the family?
Yeah. Thyroid's on her side.
Has she had her tested ever?
No. I don't think she has, actually.
Do you think she has any symptoms of it?
To be honest with you, I don't know what the symptoms are.
A thyroid checklist for Mum32:46
Hair falling out, dry nails, anxiety, trouble being rested even though you've slept. That's a big one. Is she tired all the time?
Yeah. I think she can be. Yeah. Yeah. A few of those sounded like some boxes to tick.
It it work it's worth looking into. Yeah. Yeah. Because maybe because you will see sometimes you will see people get put on, like, like, anxiety medications or SSRIs or something like that for, like, depression or, like, low mood or something. But those are it can be can be side effects of of a thyroid issue.
And if she's got it in the family and your son has type one, it's probably worth looking into.
Yeah. I'll I'll get her to do that.
Thank you. Yeah. Put her on, episode four thirteen of the podcast. If she's interested, it'll explain kinda how to, how to look, you know, the all about it actually. Even so much as saying if I have symptoms, but my labs don't come back as out of whack, it that doesn't always mean something.
So there's a a certain test to look at to see if maybe the medication would be helpful anyway. It's just one little pill a day.
Yeah. Perfect. Okay. I've written that down.
Good. Good.
Good.
Yeah. Episode four thirteen will explain the whole thing. Yeah. Okay. Well, I just wanted to get that out of the way because you mentioned that you mentioned her being anxious earlier, and then, you know, that's it.
I have a list here for you real quick. It's fatigue, low energy, feeling sluggish, weight gain or difficulty losing weight, feeling cold more easily than others, constipation, dry skin, thinning hair or hair loss, puffy face, hoarse voice, muscle aches, weakness, cramps, or joint pain, slow heart rate, depression, low mood, brain fog, memory problems, trouble concentrating, heavy or irregular periods, low libido, elevated cholesterol, swelling in the hands, feet, around the eyes, brittle nails, slow reflexes. That's, you know, some stuff to look for. You don't have to have all of it.
No. That a lot of those ticked.
Oh, oh, look at me. Look at me saving a life. Here I go, Tom. Alright. Sorry.
I just I know I imagine that people have been listening for a long time or like, oh, Scott's being sarcastic. And people who who picked this episode up as the first one is like, the the host seems like a prick.
I'm sure they don't think that.
Well, some of them do. You should see the reviews. Now, anemia, is also something to look for. So if she's getting a full thyroid panel, she might ask them for a full iron panel at the same time.
Cool.
Okay?
I'll will will send that her way.
There you go. Then the next gig gets named after me.
Yeah. Yeah.
Although you guys are gonna need a good solid five years before you try that, I bet.
I think I think we're done.
Sounds like looks like I felt like I got hit by a truck. I'm I'm good, man.
It was funny because we were like, I'm a nun. We're like, maybe if, you know, in a few years, we're financially in a good spot, we'll try for another. And then this happened. It's like, now we're done.
We're good. That's pretty good. Well, listen. No no lie. We we really thought we were gonna have three kids, and our second got diabetes.
And we're like, maybe we should stop because it just I mean, it was it felt overwhelming. You know?
Yeah. I mean, I've listened to a few episodes of podcast now as well, and it sounds like when one kid's got diabetes and one hasn't even if it's not true, lot of the times the kids feel like there's preferential treatment. So
Oh, that was gonna happen whether one of them had diabetes or not.
Yeah. I bet.
They're gonna be like, he likes her better than me. Wait. What? No. I don't.
Yes. You do. And then you and then you think, okay. Well, obviously, I'm being nicer to that one than the other one. You go to the other one, you say, hey.
And they're like, oh, no. You definitely like her better than me. And I'm like, oh my god. Awesome. Glad we did this.
Yeah. Right.
No kidding. So, I mean, I don't know. I I guess I'd just be interested in hearing anything, like, you have to say because it's also raw for you. Like, what do you feel like is worth sharing with people right now?
The children’s ward: balls, bubbles, and blankets36:47
Well, a few things, really. A big one for me was sort of how well Kylo was treated in the hospital with their staff on the children's ward.
Mhmm.
From so for the first, I think, three or four days we were in there, it was one on one care with just one nurse. She wasn't seeing any other patients other than Kylo, or Kylo wasn't seeing any other nurses other than this one nurse. So they could really sort of focus on him and make sure he's getting the best treatment possible. Even from the first day he was in the room, they have some entertainers on the ward, full time entertainers that they have a play area there, and they brought him a blanket that was knitted by someone that donates blankets to the hospital that he gets to keep. He got a little stuffed bear someone made that he gets to keep, and they sort of was were asking us, you know, what's he into?
And we said stuff like he likes, you know he sounds like he's a dog, but he likes balls and bubbles and lights. And so they come back a little while later with a load of balls and bubbles and a disco light.
You know what he loves? If you throw a ball, he loves to run and get it and bring it back. He loves that. They give him a treat. It's fantastic.
Yeah. Exactly. Balls and bubbles. No. Listen.
I like those things. Actually, I was walking out of somewhere a few weeks ago. It's this windy day, and it was a it was a scenario. Listen. I'm just gonna tell you.
I was at a reptile convention. I don't need to be judged, but I I was at that. Right? And I was walking out, and this little girl had a bubble wand. And she dipped it in a thing and just walked out ahead of people, and it was so windy that the parking lot just filled with bubbles.
And I have to tell you Oh, wow. It was really lovely. It made me feel like, well, this should happen more often. You know? So I don't know.
We should, bubbles and balls is a good idea, maybe. So they bring him all that stuff, then Benny Hill runs through. They're really trying to entertain them. Right?
Yeah. Exactly. Well, that yeah. That's another thing that, you know, each day they'd have someone visit the hospital. So one day, there was a a sort of someone bringing a dog around that goes to see all the children.
Another time, there was a lady with a guitar that, you know, plays music through and stuff like that. So it was full on trying to keep him as happy as possible.
Yeah. That's very nice. Well, they want him to have a good experience at the hospital. Right? Because you might have to come back one day, it'd be nice if he had a good feeling about it.
Yeah.
For sure.
So what do you I mean, how much insulin does he use in the course of a day?
I think at the minute, it's about nine units of insulin.
Okay. How much of it's basal? Do you know?
Do you know what? I didn't write that down.
Do you shoot the basil once a day?
When we were on the pens, we did it twice a day.
Okay.
We did, I think, one and a half units at night and one and a half units in the morning.
Was that Levemir?
It was Levemir. Yeah.
Yeah. Yeah. Okay. So you that's a it's smart for a little kid like that. So they split the basal when you were injecting one and a half, one and a half, and then, obviously, gets food with meals.
And, like, what's a what's an average, like, size meal carbs and insulin for him?
Yeah. So this was the tricky thing because sort of his bedtime milk was bedtime milk was perfect because it was half a unit of insulin. Mhmm. So that worked out great. But whenever we were giving him sort of dinners and stuff like that, he'd it'd be, like, one point one units or one point four units of insulin.
Then you have to decide, is he gonna eat more? Is he gonna you know, when you don't even know he's gonna eat that to begin with, or do you eat under bolus and then try and figure out afterwards? So, yeah, when it was on the pens on that half unit increments for for a kid that small, it was just impossible.
Still a lot. Yeah. A half unit's still a lot. Hey. You just said that's the tricky part.
Let me let me I don't wanna break your bubble here, but, like, you're gonna say that about 8,000 more times in the next ten or fifteen years. Yeah. I'm sure. Yeah. The tricky part is gonna keep changing.
Wait. It looks like he won't pre bowl. He's 15. He won't honey, he won't pre bowl us his meals. You'll be like, oh, no.
That's the tricky part. Then it'll be the next thing and the next thing and the next thing.
Keep moving the goalposts.
Yeah. But you're paying attention really well already, like, little things. Like, you seem on top of it. What do you do for a living?
I'm a manager at electronics factory.
K. So production, people, like, overseeing things, paying attention to details?
Yeah. I mean, it's only a small company. There's only about 15 of us there total, but, yeah, trying to keep everything running, keep on top of things.
Yeah. You feel like you're doing that with the diabetes too, I imagine.
Yeah. I think I've got quite a scientific mind and quite at school, it was more the sciences than the arts for me. Mhmm. So I I've got that kind of thinking where I I figured find problems and solve them, basically.
Yeah. Well, that'll help you with this. Is it making you crazy, or are you doing a good job of stepping back from it at times?
Exhaustion, sleep, and the parents’ toll42:06
I think there's been stages. So when we first went home, I was probably I don't sleep well anyway. I probably sleep about five hours a night interrupted. But when we first got home, it was, like, every half an hour, was awake just checking his levels, seeing if he's alright.
No, man. I know.
But but that that sort of wavered. Now when we've got the pump, it's back to that at the minute. Just just so I know that it's alright, and then I can leave it again. Mhmm.
Yeah. So, I mean, you have it on your phone as well. Right?
Yes.
Yeah. So you don't have to go to where he is. But No. Are is he having many lows overnight?
It's been mixed at the minute. So the diabetes team, when we first got discharged, they'd call us every day to sort of tweak levels and that. Then they went to twice a week, then they went to once a week where they'd call us and help us tweak some levels where we thought it was necessary and checking with us. But, yeah, he he he was going low in the night quite a bit, and I think that's when they'd switched his basal to twice a day instead of once.
Were can I ask you before you split the before you split the Levemir, were you shooting it at night?
Yes.
Yeah. Night. And then it was too heavy, and he was getting low overnight.
Yeah. Exactly.
Okay. Okay. Well, that's good. By the way, that's well done. Levemir is an older insulin, but it's perfect for something like that.
Yeah.
It's funny actually because we're just about to swap over to Lantus, is it? Lantus? Lantus.
When they put you on the pump instead.
So just as a backup because I think they're stopping making Levemir or stopping it in this country at least.
They are. By the way, if you wanna hear a lady who is in Washington DC trying to fight against it, she's been on the podcast a couple of times. Oh, really? Yeah. She's trying to figure out a way for them to keep making Levemir.
I don't know if that'll work. That's it sounds like a big fight to me, but it's interesting that she's trying for it so much. What are you finding community online, or where are you finding people to talk about all this?
I sort of talked to, like, my friends and work friends and that in passing about it a little bit. But other than that, I just really listened to your podcast, to be fair. Oh. But I think my wife's on some Facebook groups, and, actually, we we got really I don't know if you'd call it lucky or irony or something, but my wife's auntie is a pediatric nurse who specializes in diabetes.
Oh my god. Okay.
So so she was actually when when we got diagnosed, she came to the hospital and stayed with us for a while to help us with it as well.
Oh,
nice. But, yeah, it's a sort of a a lucky but unlucky thing that we've got someone really close to us that, you know, helps us with that.
Do you know how she got into that line of work?
I don't actually. I've never really asked her. Yeah. But yeah. Not because of diabetes in the family.
No. No. No. That's what I'm saying. Yeah.
It's not in the family, but she ended up there. So that's interesting. Yeah. Sorry. I cut you off.
I apologize. What were you gonna say?
Oh, goodness. I can't remember really.
Sounds like that's over. That part is gone. I don't know what you're saying. Hey, Will.
I mean It it the community's one that yeah. So I I think my wife sort of dabbles in it a bit, but at the minute, we haven't really seeked out any communities nearby. We're just sort of getting getting to grips with it ourselves. And then I'm sure probably we'll try and, you know, see some more people with it. But to be honest, listening to the podcast for me is just it's interesting to hear other people's stories.
That enough for me is a bit of comfort that it's not so bad, and it's not, you know, just you that's going through this, if that makes sense.
No. No. No. It it it more than makes sense. I'm glad that you found it and that it's been helpful for you.
I think that some of the unsung support systems of having chronic illness in or having one in your family, community is a big part of it. It it really is to that feeling of, like, it's not just me is very helpful. Yeah. You know? And especially in a situation like you've been at this, what, like, three or four months Yeah.
It probably feels like a lifetime. And I'm sitting here fully remembering the first few months of my daughter's diagnosis, and she was two, and she's gonna be 22 in, like, a couple of months.
That's crazy. Yeah.
No. It really is. I used to be young. I I I for sure I for sure was, you know. It's it's a long process, and it will change over and over again.
I think, you know, again, another another tool that'll come in really handy that's very in specific is just trying to be flexible and, you know, keeping up with, yes, day to day, but understanding that things come and go and they change. You have to be able to let go of them or not take things quite so seriously at certain times. I think that's why some of these conversations are probably helpful to you because they're lighthearted. You know, we're talking about something really devastating. And, I mean, listen.
I don't even think we've ever just said it out loud yet, but, like, your son just about died. That's Yeah. That's something, man. That's a hard pill to swallow, and that's gonna come back at you a couple of times. Like, you know what mean?
Like, yeah. The fragility of life is is like, once you get through this part here, you are probably gonna have a moment where you reflect on this, you know. And it it it'll be hard to deal with.
Few times, to be fair already. Every now and then, I'm just like, you know, the the severity of the situation weighs down on me, and I'm just like, oh my goodness. Yeah. It's funny, actually. I was I wrote up some notes for doing this podcast just so that I had everything to hand so I wouldn't forget anything.
And my wife came upstairs. I was typing this. She came up, and I just my face was wet with tears. And I was just like, oh, yeah. No.
This is a sad thing. This is tough. Yeah.
Yeah. You're you're acting like, oh, I'm just gonna give you a high level overview of what's happened to us over the last few months. But it's a it's a devastating, I mean, event. It it just is. Yeah.
You know? And Yeah. And so then that mental health side of it becomes really important too because you you hear people in all, you know, in all forms and factors of of being involved in diabetes, and sometimes they're fighting with their spouses, and sometimes they their anxiety is crippling, and sometimes they're so laid back that you think, like, jeez, pay a little more attention to it. You you you know, like, there's you don't know which way you're you're gonna kinda go to. But if you have a, you know, if you have a bit of a plan and you're able to stay flexible with that plan to some degree, and and realize that things are gonna continually change and that they're really the only way to getting to, like, calm is through experiences, I think that's really important to to just to understand that, you know Definitely.
Every time something goes wrong, you know, quote, unquote, it's a great opportunity to just look back and say, okay. What happened here? Like, how can I do this differently next time so that we have a better outcome? And those experiences end up being what teaches you. Like, you need the basic tools.
And if you go through, I mean, if I was you, if you haven't, I'd listen to the bold beginning series of the of the podcast, and it'll help you with all this. You you know? And and then one day, you'll wanna level up a little bit. You maybe you jump over, do pro tip series. But overall, like, you just have to have the experiences.
You have to pay attention to them, and then use them as data for next time.
Yeah. Yeah. Like not having another kid.
Well, it's just like it you're it's it's like learning to walk all over again. Nothing makes sense. Nobody tells you anything. I mean, even that, there's phrasing. Know, people are bolus, basil, levamir, Lantus, ipsumed.
I mean, look at all the weird words you've said in the last forty five minutes already. You know, like, words you didn't know four months ago. And Absolutely. And that's overwhelming too. You you know?
So just take your time, you know, and then I mean, my best advice might be just leave yesterday behind. I try not to carry any of the anxiety from today into the next day because it it will build up on you. And I and I and I should say this too, you gotta sleep.
Yeah. Do know? I've just never been good at sleeping, so I've I've tried to get that figured out. But last time I went for a sleep study, and they checked me for one night, and they said don't sleep on your back. And I was like, okay.
Thanks. Big help. Appreciate it. Cheers. Yeah.
Awesome. Good good use of my time. No. But, I mean, listen. Maybe you're a guy who gets five hours of sleep and you're okay.
What I'm saying is don't get exhausted.
Oh, yeah. Yeah.
Yeah. And the broken sleep is hard on you. Like, you have no idea right now, but, you know, I did what you talked about, like getting up here, checking again. I did that for years. It it, like, devastated me, but I never knew I was devastated by it, like, physically.
Yeah. And Yeah. It wasn't until one night I was sitting up, like, staring at Arden's CGM or doing whatever I was doing or testing her a million times. And think my wife woke up in the middle of the night and she looked at me and I was just laying there with my eyes open. And she's like, what's wrong?
And I was like, I'm gonna have a heart attack. And she's like, what? I'm like, my heart is pounding. I'm so exhausted. Like, I'm so freaking exhausted.
She's like, go to sleep, and I was I I was like, I can't. Like, you know, like, you know, and truth is is, you know, I I could. And, you know, it's twenty years later, and she's still here and doing great. So Yeah. You know, there's gonna be moments where you're gonna have to be up in the middle of the night like anything else, but you absolutely have to find some sort of a balance.
I mean, looking for balance, between health and good outcomes and your mental health and your physical health. Like, it all has to work out. You can't give yourself away for him or give him away for you. Like, none of that's gonna work. You know?
Yeah. Absolutely.
Wow. You grew up pretty quick here. He went from, like, 30 years old, like, hey. We got married finally. You know us.
We're just busy, busy. So, like, woo.
Yeah. It was all sunshine and roses, married kids, then there you go. Curb ball.
Exactly. Yeah. You should probably have sex again in, three years. Sorry. That might be true.
I apologize. But it does bring up a a good point. It's tough with a baby, but if you can find somebody in your life, your mom, her mom, somebody, you know, that could even be caregiver for a couple of hours so you guys could go out once in a while, get away for a few minutes, that would all be a really big deal for you.
Grandma, date nights, and finding balance53:09
Oh, I do have to say that my mom has been the most amazing helper out of all of this. So before he had was diagnosed with diabetes, she'd have him two days a week. She's retired. She was in the fire service, so she got to retire at 55, which was pretty nice. She loves the kids, so she just wanted to be a help.
Me and my sister, we both got kids now, just wanted to help with you know, look after them because that's what she lives for. Since he's been diagnosed, she's still doing that. She still has him twice a week while my wife goes to work. In fact, just last weekend, she had him for the night while we got to have a little date night and fall asleep on the sofa at 09:00.
Good for you. That's awesome. Also, if my kids are listening, if you make kids, I will immediately retire and take care of your kids. So that sounds pretty great, actually. No.
Seriously, I would enjoy that. I I I mean Yeah. Yeah. I don't know how much you know about me still, but I was a stay at home dad most of my life. So Right.
Yeah. Yeah. Yeah. So I would if if anybody wants to make a baby and then just give it to me for a while, I'd be good with that.
Yeah. I I so every now and then, whatever our situation is, I have to stay at home with Kylo while my wife or someone goes to work, and they're the best days in the world when I've just got him and me doing whatever we wanna do. It's just
No other response. No no no other forget no other responsibilities. There's, of course, responsibilities, but there's no other thing that supersedes that. And so everything else sort of fades away and you just, you know, you're just there doing that thing. Yeah.
Absolutely. Yeah. He's just such a character. I look at him and go, this is perfect.
We used have this little house when Arden was little, and I can I can still see the first time like she stood up like by the television and walked across the room to me? Like I can like I can still see it in my head, you know. So Yeah. And I don't know what I did that day. Probably laundry, made food, watched her walk.
That's probably the end of it. You know? I don't yeah. Yeah. Yeah.
Yeah. So don't well, listen. It it sounds like you're doing well. You don't feel overwhelmed or anything? I mean or so much you you do, but not to the point where it's knocking you over?
Yeah. I mean, I I feel like there's still some days where, you know, a lot goes on. He's high and low every other hour sort of thing. You're like, oh, this is so much work. But for the most part, he's he's so good with it.
We're getting good with it, and, you know, we're just living a happy life. And you you we just look back and go, no. It's not too bad. You know, it could have been worse. He could be in a wheelchair.
He could have some brain disease or something. As far as, you know, illnesses go, it's not it's it's pretty manageable, isn't it? So
Yeah. That's a very reasonable expectation that, you know, that it is pretty manageable. You just need to know certain things. And but but how do you get those things? Like, so what happens to some people is they don't hear that information.
It doesn't get delivered to them or something like that. And I guess that I'm gonna figure this out. Like, how did you find a podcast about diabetes? But at the same time, you have a decent microphone, and I'm now noticing in your picture that there's egg carton on your wall. So why why is your room sound
my picture.
Why is your room sound dampened?
So me and my friends like to play video games, so we just stream every now and then. Stream to no one, but I still enjoy sort of putting the videos together and, you know, making them a bit of fun. So that's it, really.
That's what it's for. Does that Yeah.
It's it's for good audio so that the three viewers that watch my videos Are
really being delivered high quality content?
Yeah. They're like, wow. This is a good good idea.
Jim, Bill, and Sammy. The Yeah. Exactly.
Well, more realistically, me, me, and me checking the quality on three different devices.
I'll tell you what. This sounds great. It looks terrific. If anybody ever decides to listen, they're gonna be thrilled with this.
That's good.
Yeah. I just built I've been making this podcast in a room for twelve years, and I just built a small studio space that I'm I'm still fitting out, and I have a lot of traveling to do over the next month for work. So I'm not gonna get to do it in June. But I'm trying to decide right now what to put on the walls for sound. If I'm just gonna do, like, you know, simple frames with with fabric over them or if I was you know, some some people are like, they do those wood slats.
They look all fancy, but I don't know who would I don't know who I'm worried about it looking good for. Yeah.
I was gonna say they do some really good looking sound dampening stuff. But, again, near an audio podcast, unless it's for you, you know, I suppose it is nice to go into a space and go, yeah. This is my space.
Yeah. I'm too old. I grew up broke. I don't care what it looks like. I just want it to work.
You you know what I mean? Like, there's part of me that would just hang curtains around the walls and just be like, here. That's fine. So
Yeah. I mean, what what you can't see in that photo, because that's quite an old photo now, but I do have one of my wife's old blankets stapled to the wall in the background. And
she's still married you. That's nice. Yeah.
But you don't need this. It's summer. I love this.
She's like, goddamn it. I waited too long. Now I'm stuck with this guy. He's just he put my blanket on the wall, but we've been together for ten years. So what am I gonna do?
You can't say no now.
I'm pod committed. Goddamn it. I didn't know this was gonna happen. No. Yes.
I'm not sure what I'm gonna do, but I'll probably just build simple frames and and hang them. I mean, the those sound diffusers working. I mean, I have them in here. I'll probably just move these downstairs and get a couple more if I'm being honest. Yeah.
I mean, I think there's a point of diminishing returns anyway where, yeah, average viewers listening sort of on loudspeaker on a phone or something. So it don't even matter.
Yeah. There's a I I I have noticed over the years that bad audio will will chase people away. And and so I wanted to be a comfortable experience. I also have an editor which, you know, who does a great job of making it sound much better, to the point where sometimes I meet people in person. They're like, you you don't sound the way I expect you to.
I'm like, yeah. Yeah. Someone's not behind me tuning my voice for you. So Yeah. But I wish
I had an editor.
Yeah. Yeah. Yeah. You wish I had an editor.
You listen. For real life.
Yeah. For real life. And that
the amount of uhs and and forgot.
I try I think I'm I'll tell you in the beginning, I wasn't I mean, ummed all the time. I used to I tell people all the time I used to hang sticky notes in front of me with words on it with lines drawn through them. Like, don't say that. Don't I used to have connecting words and, you know, like, stuff like that. I tried to get rid of as much of it as I could.
But at the same time, I don't know. You can't not say, It it some sometimes it just happens. And some of it sounds unnatural if you take too much of it out. You know?
It's too perfect.
Yeah. Nobody speaks. Like, that'll you know, if if you edit it too well, it'll just sound like it's AI. And I have enough content now. I could probably train an AI to make these episodes, so don't give me any ideas.
You know what I mean?
You could retire.
Scott's been doing this for twenty years. I'm like, no. I just
Yeah. Is this AI? How can I check?
Yeah. You can't. Leave me alone. But I am real. You should trust me right now.
Okay. But, you know, sometimes people are like, oh, it would be great if you did video. And I'm like, with who? Like, what am I gonna do, Tom? Like, you know, make you set up video and then you capture your video and I can't who's gonna edit that?
Like, who's gonna like, that's I I love it when people say that. Like, it's easy. You know what I mean?
Yeah. Add so many dimensions to it, doesn't it?
Yeah. And for I don't know where the return is for that, to be honest with you.
No. I mean, from my videos, had we played video games, I have a web webcam. I'm like, this just isn't fun entertainment. I'm just staring at a screen.
Yeah. There's one guy that made money doing that, and he's still the one doing it. Like, if it you and you probably know who I'm talking about. Like, the guy that plays Call of Duty, he's got the dark hair, and he's got, like, the whole thing. He's made, like, a life out of it.
Probably a millionaire, like, 10 times over the
but, yeah, Nick Merx comes to mind.
Yeah. Him. That's who I'm thinking of. Yeah. So my point is is he's doing it already.
He we don't need you. It's it's and I feel that way about a lot of content sometimes. I mean, right now, you know, if you want, you can go hear the same political commentary from a thousand people. Yeah. Yeah.
Like, at what point do you say to yourself, someone's got this covered? I'm I'm probably Exactly. I don't probably need to start up, but, you know, the this whole thing. Now somebody says
There's so many fingers in the pies anyway. To get noticed when there's already a million semi famous people doing it is basically impossible nowadays.
Oh, listen. I between you, me, and everybody listening, I make an incredibly popular podcast. If I stopped right now and tried to make a different one to start over, I'm sure no one would listen to it.
Yeah. It's tough, ain't it?
There's just no way to, like, to get recognized or or to get to enough eyes to, like, create some momentum. I had, when I started doing this, I'm I'm pretty certain I'm was probably the first one to start doing it. So I was ahead already. It was the only thing out there, and I had a really popular successful blog that I could pimp the out of the of the podcast on in the beginning, you know, say to people, look, have a podcast. Have a podcast.
Plus back then, social media was actually like, those platforms actually helped you reach people, which that's not even their goal anymore. So Yeah. Yeah. They're they're not trying to help you reach somebody. They're trying to they're trying to get you to desperately try to create create an audience so they can sell that audience ads.
Absolutely.
It's a different it's just a completely different animal. If I restarted right now, I don't think 10 people would listen.
Yeah. I think I just need a scandal. That normally gets you big.
What kind of scandal are you looking for?
Well, any right now.
Like I just
Made me famous. I gotta
pop this thing up. I don't know, man. It's I I'm listen. I'm famous in a space, but outside of that, that no one has any idea who I am. And that's pretty nice actually.
Like, I can't imagine what it would be like to walk around all day long with people knowing who you are. It seems exhausting to me. Yeah. It really does. I I do it for days at a time at like events and stuff like that.
And there's this thing that happens. Like, you walk out of your room the first time and you're gonna go down to a convention floor or to a speaking engagement or something, and there's a voice in your head that that literally goes, smile. Like, even when you're walking by yourself, smile because you you you come to realize, like, someone's looking at you. And Yeah. You know, it's it's I I've I've had experiences where I've been standing in public and thought, man, my butt itches, but there's really nothing I can do about it right now.
And and you you think you're making it up, but then my wife went with me for the first time last summer to something. And we were walking around for, I don't know, half a day, and she just looked at me and she goes, everyone here knows who you are. She's like, it's ridiculous. Like, everyone's, like, either looking at you as they pass you or, like, looking back over their shoulder as you're going by. And I think she thought I was making it up.
You know what I mean? Because for all those years. And I said, no. I told you. Like, this is it's she's like, this is insane.
I was like, no. I know. Yeah. Yeah. And then I walk outside and it's over.
It's perfect. You you know what I mean?
That's how you wanna end it.
100%. Because I'm also not wealthy. And there's that old saying of being famous without being wealthy is like torture. Like, there's some sort of because you because you can't get away.
Yeah. Yeah.
I can just get away. I can just leave a diabetes thing and then nobody knows who I am, which is perfect.
Don't have to wear masks at the shops or anything.
Wouldn't that be something? I just saw a ton of pictures of, apparently, Michael Jackson used to go out in all these weird disguises, and there and I saw, like, a thousand pictures of him in all these different weird disguises. It's pretty funny.
Yeah. I think he actually got a shop built and paid actors to be normal people in the shop and not interact with him just so that he could feel what it's like to go shopping.
Did he really?
Yeah. Something like that.
Well, that's insane.
Might have to fact check me. No.
No. That's another level of, like, reason why I I don't think any of us wanna be famous. Right. But, no, it is really interesting, isn't it? That, you know, so many people have access to the possibility, and so they try all the time.
Like, I I I comment all the time that most of the people on Facebook or Instagram or whatever, in their bio, it says digital creator.
Yeah.
And I'm like and and you yeah. I used to go look, you know, and, like, there's three people. I'm like, you're not a you're not what? You you know, like like, it would be like if we all just decided we were attorneys, and everyone's bio just said attorney at law. And then I said, I know, have you practiced ever?
No. But I'm I'm thinking of it. I'm like, oh, okay. So Yeah. What is I don't know what those people are gonna do when that dream dies.
Is that really a thing people think about? Like
It's got got me on it.
Yeah. It's it's it's interesting because I didn't do this on purpose, so that's why it's confusing to me.
I think that's where where it probably you know, I think if people try too hard at stuff, unless you really, really want it, some people make it and think this is gonna be big. But most of the time, it's gonna pull the node. Yeah. Yeah. Exactly.
Yeah. Yeah. No. I didn't I didn't do any of this on purpose. Like, I just I think I just I think by virtue of maybe sharing my story of being open and vulnerable, you know, there being a pathway that started with me not knowing what I was doing to getting to having some decent idea of what was going on and the fact that I am very unapologetically just myself.
So, you know, like, I'm not trying to I must come off I don't know, but I must come off authentically to people because I know I am not censoring myself.
Yeah. Yeah. And that's the way it should be.
Yeah. Somebody was mad at me the other day because I said something, and I was like, I don't even know what you're talking about. Like, I and and I'm not gonna go look in case you're wondering. Yeah.
I don't care.
Yeah. I I I spoke I speak for an hour every day, and at the end of it, I never think, like, oh, I should cut that part out. And if I've ever had that thought, then I go, okay. Well, I'm not gonna cut that part out, but I'll be you know, I won't say something like that again. Yeah.
Yeah. It just I think it's just the only way to do this at this point. Well, especially with so many people doing the same thing and and, you know, a lot of them wanted to use, like, those big, like, television announcer voices when they're talking, and some people sound like they're doing the local news, you know, when they're making their podcasts and
Yeah. Or reading off tele prompters and stuff.
Yeah. Yeah. Yeah. You can you can see them doing it too because everybody makes video now. I'm like, you're reading this.
Like Yeah. Why don't I get an audio book? I don't need you. Yeah. Yeah.
Right. Either talk and say what you think or not. And, you know, it's funny because, you know, you and I could have this conversation tomorrow for the first time instead of today, and I'd probably say different stuff to you. Yeah. You know?
So, I don't know. I think that's really interesting and and invaluable. So tell me, like, what do you think is coming? Have you have you tried to imagine ahead three more months, a year? Like, what what do you what are your expectations?
So at the minute, I think we're still in a bit of a bubble because he's so young. We've, you know, we've got three, four years. I don't know. Yeah. Two to two odd years until he starts, you know, nursery and stuff properly.
We were gonna get him in nursery sooner, but now we're not so sure. We think we might just look after him for a bit. But at the minute, we're in this sort of bubble where we're in control of everything. But the more I listen to your podcast and the horror stories of schools and stuff like that, I'm like, oh, well, that's around the corner. You know?
Soon, we're gonna have to start thinking about neither of us being there with him and relying on strangers and that.
Yeah.
So I think at the minute, we're coasting, but as soon as that comes, we're gonna be it's it'll be the next thing.
Yeah. No. You're exactly. It'll be the next it'll be the next thing and the next thing. Does the Ipsumed pump have an algorithm, or is it just a manual pump?
No. It does have an algorithm. I checked with the doctor today, actually, because I was wondering because it it was doing things that I was unsure about. You know, there was stuff there's times where he was going high and it wasn't giving any insulin and stuff, and
I was
like, that seems weird. But it always works out. And as the days have been going on with no changes, it's getting more and more in range.
Okay. Good.
But yeah. So it's definitely learning. And, obviously, like I say, it's hard with a kid that young. We you know, for one, we're still trying new food to them, and we don't know if he'll eat any of it. And sometimes his favorite meal, he'll be like, I don't want it.
Yeah. Yeah. It's the fun part. I would
I'd say it is.
Yeah. That's why a lot of people with young kids, when they pre bolus, they pre bolus, like, a tiny amount. And, you know, just enough to, like like usually, the way I say it is there must be an amount of carbs that you know for sure he's gonna eat. Like, at least pre bolus for that amount. And then once you see him eating and he's okay and it's happening, then you can put the rest in as fast as you can.
But, you know, just to stay ahead of it a little bit. But No. I know. I know what you mean. Like, you make something for a kid, they're like, yeah.
Yeah. Yeah. Yeah. And then you put it in front of them, like, no. And then that's you know, like, then you have that fear of, like, oh, the insulin's in.
Like, what do I do? But Yeah.
Pre-bolusing a toddler, and coming back in a year1:10:41
And and for a while, our diabetes team was saying first, they wanted to pre pre bolus everything, obviously, but then they were saying because we were struggling, we were pre bolus, and then he wasn't eating. And then you're trying desperately to get someone in him before he starts going low. Mhmm. They they said to us, for stuff you know, he'll have, like, his milk and that prebolised. But if it's a new meal or if it's a meal, he might take, you know, half an hour to eat playing with it, then just bolus as soon as you give him the food.
And that definitely worked while we were sort of trying to get more foods that we know that he'll eat. Mhmm. Like peanut butter on toast, that's a guaranteed He'll polish that off now. So that's a good one to have for breakfast. Awesome.
Yeah.
Yeah. That's see, that's a great way to just do this. Just common sense, pay attention, learn from, you know, the past, and and apply it to the future and and move forward. I'll I'll tell you seriously. I'll say it again.
The bold beginning series in the podcast, that'll help you. If you listen to that, it'll it'll help you, like, bring your ideas, like, you know, full circle and and give you some good starting points. Man, wow. Jeez. You're right at the beginning of this.
You're making me feel old, Tom.
Is there some flashbacks?
Yeah. No. You're making me feel old. It's it's not pleasant. So
I'm sure you're not old.
Trust me. I'm old. You don't say it on the podcast because it turns people off, but I'm gonna be 50 I'm gonna be 55 this summer.
So That's that's not old by today's standards.
Well, I got the GLP now. I can live forever. There you go. Yeah. Yeah.
It's all gonna be fine. What do you so you've it's so interesting to talk to you because you really don't even know what to imagine yet.
No. I suppose it's still so fresh, and I wondered about even saying, should I, you know, share my story this early on because I don't really know anything in the grand scheme of things. But I I sort of just wanted to come on to talk about it. So I heard some of your other guests talk, I was like, I think this would be a valuable bit of entertainment for some people. Well, not even entertainment.
You know? Just
It's interest.
Something good to hear.
Yeah. No. I I agree with you. Also, it it gives us an opportunity because I'm not planning on not, you know, stopping doing this anytime soon. Like, it's a good opportunity to say to you right now, like, go pick a go take that link I gave you and go a year ahead on the calendar and drop yourself on the schedule again because it it would be interest yeah.
It would be interesting to hear you, like, walk through this. Yeah. You know what I mean?
Absolutely.
Yeah. Yeah. And if my calendar doesn't go ahead that far, just reach back out and, you know, at the end of the year, and I'll be able to it'll open up for the following year. I'll give it to you then. But, yeah, you should yeah.
Come back in a year. I'd like to hear what what you figured out, what's changed, and just do a check-in with you. And maybe we'll maybe you and I'll do that, till the end. We'll get you that way you can start streaming.
This is such a weird reference, but have you seen on YouTube? I think it's for variety or something. Billie Eilish does the same interview with the same questions every year.
I don't know that, but that's a great idea.
It'll be a bit like that.
Yeah. Yeah. No. That's a
Every year, we'll check on Kylo, how he's been.
Yeah. No. It's a it's a great idea. When does he how old when he turns into Darth Vader, when does that happen?
Well, you know what's so funny is his initials spelled k l l, which is almost the word kill, and Kylo kills his dad, spoilers, in Star Wars. So that was already a worry. But then when my wife let me pick his middle name, I picked Loki because I thought that was a really cool name.
Okay.
And in the Marvel films, Loki gets his mom killed. So I screwed us.
You just think, yeah, eventually, he'll just be in the house by himself and you guys will be gone.
Yeah. Exactly. Yeah. It'll have taken us both out.
Just be riding the dog. Yeah. Oh, by the way, you don't have a dog, do you?
Oh, I wish.
Oh, don't get a dog. Tom. Tom, you don't you don't have the time for that. I I know you think you do, but you don't. Trust me.
No. Do know that that was one thing because we work long hours. We only do four days a week, but we work long hours to make up for it. And I couldn't imagine leaving a dog home for twelve hours a day on its own. It's just not fair to the dog, is it?
We're going to a friend's graduation tomorrow. And last night, I looked at everybody. I went, what what are we doing with the dogs? Like, I was like, wait. Did anybody think about this?
And, yeah, it's it's just it's too much. They're too much. I love my dog. I use awesome. And even the other one's not bad.
But, man, like, being responsible for things is it's tough. And when they're little, it's fine. Like, you just leave them home. They're fine. Like, you know what I mean?
You come back a couple hours later. It's okay. But Yeah. I you know, I've had to leave picnics to go home to, take my dog out. Like, everybody's, like, having fun on the July 4, and you're like, oh, probably that's not a big holiday for you guys.
But but then yeah. Then, you know, like, oh, you drive home, get the dog, take him out. You're like, oh, this is not it doesn't make up for it. I don't know. Maybe.
No. I think it's more of like in your head, it's a nice idea to have a dog because you see it on the movies with, you know, people having a dog that is really smart and that or really fun. Mhmm. And then you just get a dog and it's just a yappy little thing Yeah. That you have to look all the time.
I'll tell you right now. I'm looking up. I have a lizard in a cage, and he's got a misting system, and I could leave him for days if I needed to. And just somebody has to bop in once in a while, throw a couple bugs into a cup, and and he'll be okay. So Yeah.
He has been searching around the entire time you and I are talking. There's a a rogue cricket in the cage, and he is just picking through every ounce of this enclosure trying to figure out where that cricket is. And I hope he finds it because it was really loud last night when I was sleeping. So
What type of lizard is it?
Well, Tom, let's not embarrass me by going over all the ones I have, but the one I'm talking about right now is a yellow tree monitor.
Okay.
Yeah. And she is she's hungry. Like, she's doing the, like she is searching that that enclosure right now looking for something. So I'm gonna go give her something when we're done. But I also have a Parsons chameleon.
I have an Mbanja chameleon. I have these little, like, Japanese, they're called Tachydromis. They're like these little grass lizards. They live in, a little community together. They just run around everywhere.
And
Sounds like a rainforest.
Yeah. There's a couple of enclosures in here with a lot of tree like, trees and growth in it and stuff like that. It's my only ability to be outside while I'm in here making this podcast. But they're gonna move they're gonna move with me to my new my my new space
Oh, lush.
At some point. Yeah. It's gonna be nice. I'll I'll get pictures up at some point. So people I
always thought about keeping a lizard, but my mom, I don't think we had a lot of pets growing up, but I don't think a lizard would have been one she would have been too happy with. Some of them are
very slow moving. So if that's a if that's an issue, like, parson's chameleon, he's just staring at me. What's up, buddy? Yeah. He wants me to bring him a roach, and then he wants me to leave him alone.
These are his whole goals for the day. So he's just seated in a in a, like, a canopy situation on a branch, and he's just been looking at me for, like, an hour now. I'll I'll bring him I'll bring him a bug. He'll eat the bug, and and he'll be good to go. But some of them are very they're just very slow, and they they live a really interest I find them relaxing, and, it makes me, you know I don't know.
It's I feel slower when I'm in here with them. Like, calms me down a little bit. So
Yeah. Your Zen.
Yeah. Which I don't have, generally. Like, when I walk out of this room, I'm I'm working on a I'm working on, like, a twenty one day, like, guided program, like, a kind of a thoughtfulness program through diabetes. And, like, I'm gonna go sit down and start working on that again, and then I'm gonna lose my whole day on that. So Yeah.
It's a thing I'm I would like to offer people for free, you know, where they can just kinda pick it up and and kinda take, like, step through twenty one days of ideas from the pro tip series. So Sounds good. Yeah. I've been working on that. So we'll we'll see.
But in here, nice and calm. Anyway Yeah. You were awesome, Tom. I really appreciate you doing this with me. Thank you.
Oh, thanks. I appreciate you having me on.
No. No. Of course. I didn't know you're gonna have such a good microphone or we could have done it sooner. And and for everybody else listening, this is what you're supposed to sound like when you come on the podcast.
Nice and clear.
Should we do an advert for Blue Yeti?
Is that all it is today? Look. That's a very affordable little microphone. They've been around forever too.
Yeah. They're, like, £80. They're not bad at all.
No. That's what they've cost forever. Like, that's even even that's nice. They must just oh, they're just selling them out there to all those people who think they're gonna be digital creators one.
Yeah. Exactly. In fact, I think I picked it up off eBay. I think it was, like, £50 or something.
Yeah. Yeah. You picked it up off the sad guy who realized that his his Yeah. Little bustling gonna work out.
Just put a notch in it for each creator that didn't make it.
That'd be great. This thing gets passed around the world. It's just got little sad eyes on it everywhere. I really thought people were gonna be interested in my, insurance planning podcast, but they just they didn't I I don't know. Was it was such important work, but nobody cared.
We do see what happens next. Oh, yeah. Yeah. The Internet's gonna change so much in the next five years. It's gonna be crazy.
So anyway. Alright. Hold on one second for me. Hang out here for you because I'm gonna talk to you after I hit stop. Okay?
No worries. Thanks.
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